Public hearing 25 - The operation of the NDIS for First Nations people with disability in remote and very remote communities, Alice Springs - Day 1
SPEAKER: Good morning, everyone. Look, what we will do first is we will ask all you to join us in a smoking ceremony. Smoking ceremony to us as Aboriginal people is a cultural practice that has been passed down from our elders and their elders before us. We do our smoking ceremony when we are inviting people to our country here. We do our smoking ceremony welcoming babies into the world, and then also in the passing of a loved one. So the girls will lead our smoking ceremony and if we invite you all to join in and take part in our smoking ceremony.
Well, I hope you enjoyed that just as much as we enjoyed, you know, giving this smoking ceremony to you all. The leaves that we use is a bush medicine around here for us mob, and, yeah, it's one that is very healing for us as Aboriginal people and we love the smell of it. So I hope you enjoyed that.
Werte Merre Achinya Arrenda Kristy Bloomfield Central Arrernte, Eastern Arrente and Alyawarra Apmerke-artweye of Mparntwe. Welcome. So good morning, everyone, my name is Kristy Bloomfield. I'm a traditional owner of Mparntwe here, Alice Springs. I would like to acknowledge our elders past and present and our emerging leaders. I would like to acknowledge the native title determination made by the Federal Court was made in 1999 that native title was recognised here in Mparntwe, Antulye and Irlpme. In Central Australia, we are rich in our culture, language, knowledge and history, where a sense of kinship, strong leadership does much to provide to the Aboriginal population. When people visit Mparntwe, they see our vast country where the famous Albert Namatjira painted for the world to see. Central Arrernte people have always welcomed people to Mparntwe here in Alice Springs, and today is no different. Once again, on behalf of all the traditional owners of Mparntwe, we welcome you here to Mparntwe. Always was, always will be Aboriginal land. Thank you.
<COMMENCE 10:16 AM
CHAIR: Good morning, everyone. I would like to extend a very warm welcome to everyone who is participating in or following Public hearing 25 of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. This hearing, which is taking place at the Alice Springs Convention Centre, will examine the very important topic of the operation of the National Disability Insurance Scheme for First Nations people in remote and very remote communities. I would like to extend a particular welcome to all First Nations people who are present in person or who will be following this hearing on the live stream.
Can I commence by thanking Kristy Bloomfield and Barbara Satour, the traditional owners of the Mparntwe that's Alice Springs for welcoming the Royal Commission to country and performing the smoking ceremony this morning, in which we all participated. I would like particularly to thank the young women performers who braved an exceedingly cold Alice Springs morning to add to the smoking ceremony.
Can I also take this opportunity to acknowledge Commissioner Andrea Mason, OAM, for her tireless efforts to ensure that the voices of First Nations people with disability are heard in all aspects of this Royal Commission's work, including, of course, hearings such as this one. We are delighted that finally the Royal Commission is able to hold a public hearing in Commissioner Mason's place of primary residence, that is, Alice Springs. This is the one occasion upon which Commissioner Mason has been spared long distance travel in order to participate in person at hearings of the Royal Commission.
This is the third Public hearing specifically addressing issues relating to First Nations people with disability. Public hearing 8 was held in the Royal Commission's hearing room in Brisbane from 23 to 27 November 2020. It examined the experiences of First Nations people with disability and their families who have come in contact with child protection systems. Public hearing 16 considered the experiences of First Nations children with disability in out-of-home care. That Public hearing was actually scheduled to be held here in Alice Springs from 17 to 24 September 2021.
Arrangements for that hearing were including the Welcome to Country, were very well advanced when we had to alter our plans because of the restrictions relating to COVID 19 with which, unfortunately, we have all become familiar. That meant, to the disappointment of everyone involved Commissioners, counsel, Royal Commission staff who had devoted so much time and effort to preparing the hearing, and, of course, witnesses who were expecting to give evidence in person and had prepared accordingly despite all of that the hearing had to be held virtually.
It's therefore a great relief that we have finally been able to conduct a hearing at Alice Springs in which Commissioners, counsel, witnesses, representative of parties given leave to appear and members of the public including, of course, First Nations people and First Nations people with disability can actually be present in the hearing room.
It's important to appreciate that this public hearing and Public hearings 8 and 16 are not the only occasions on which we have heard or will from or about First Nations people who have experienced violence, abuse, neglect or exploitation. Public hearing 11, which was conducted in Brisbane from 16 to 25 February 2021, for example, investigated the experiences of people with cognitive disability in the criminal justice system. The evidence of that hearing recorded the shameful statistic that in 2020, 29 per cent of all adult prisoners in Australia were First Nations people at a time when First Nations people comprised just 2.5 per cent of the Australian population.
In the Northern Territory, where this hearing is taking place, First Nations people comprised 84 per cent of the prison population, yet they comprised only 26 per cent of the total Northern Territory population. A significant proportion of the evidence at Public hearings 11 and 15 concerned two case studies, both involving First Nations people with disability, given the pseudonyms Melanie and Winmartie. They had been found unfit to plead to criminal charges and had been kept in forensic detention settings for many years, in conditions including prolonged seclusion and restraints that no one in this country should endure, let alone people who have not been convicted of any criminal offence.
Following the hearing the circumstances of each of Melanie and Winmartie have improved, and each has been able to meaningfully to engage with the NDIS outside forensic detention. But the systemic issues that were exposed at Public hearings 11 and 15, which result in violence and abuse being perpetrated on people with cognitive impairment, will still need to be addressed.
Let me say something about this hearing. I'm joined at this hearing in the Alice Springs hearing room by Commissioner Mason and Commissioner Alastair McEwin AM. Senior Counsel Assisting the Royal Commission this hearing is Mr Pat Griffin SC. He appears with Ms Avelina Tarrago and Ms Rebecca McMahon of counsel. All three, I'm pleased to say, are present in the Alice Springs hearing room. I will take appearances shortly from the legal representatives of parties given leave to appear at this hearing.
I wish to take this opportunity of acknowledging the contributions of Lincoln Crowley QC, now his Honour Justice Lincoln Crowley of the Supreme Court of Queensland, to the work of the Royal Commission. Justice Crowley was Senior Counsel Assisting the Royal Commission at Public hearings 8 and 16 to which I have referred previously. He was also involved in the preparations for this public hearing prior to his appointment to the Supreme Court of Queensland. We congratulate Justice Crowley and wish him all best in his judicial career.
This Public hearing will take place over five days. We expect to hear from about 27 witnesses, 12 of whom will give evidence in person. Of the 27 witnesses, 19 are First Nations people. They include First Nations people with disability who are participants in the NDIS, family members of NDIS participants, witnesses representing First Nations organisations providing services and advocacy to First Nations NDIS participants. This last group includes representatives from the NPY Lands and, in particular, the NPY Women's Council; the Marninwarntikura Women's Resource Centre; the First Peoples Disability Network, FPDN; and the National Aboriginal Community Controlled Health Organisation, NACCHO.
I wish to acknowledge the many contributions to the FPDN to the Royal Commission's work. These contributions include giving evidence at hearing and assisting the Royal Commission to engage with First Nations people with disability and to gain the benefit of their experiences. Mr Damian Griffis, the CEO of FPDN is a member of the Royal Commission's First Nations Peoples Strategic Advisory Group and Mr Griffis will give evidence this week's hearing together with the FDPN Deputy CEO Ms June Riemer.
The origins of FPDN can be traced to a national gathering of First Nations people with disability in Alice Springs in 1999. Alice Springs can be regarded as the cradle of many important campaigns involving First Nations people, including First Nations people with disability. And this is one important reason why it is entirely appropriate for this hearing to take place in Alice Springs.
As I am sure people following this hearing will know, the hearing is taking place in the week following NAIDOC week, the theme of which year was “Get Up, Stand Up, Show Up”. During NAIDOC week calls were made to people around Australia to listen respectfully to the voices of First Nations people, particularly voices advocating for systemic reforms to address the multiple disadvantages faced by so many First Nations people. Listening to the voices of First Nations people with disability and their supporters is very much in keeping with the theme of NAIDOC Week and with discharging the responsibilities of this Royal Commission.
Let me give a little background information for the purposes of this hearing. The Terms of Reference for the Royal Commission require us to inquire into what governments, institutes and the community should do to better protect people with disability from violence, abuse, neglect and exploitation. In undertaking these inquiries, the Royal Commission must take into account the people's experiences with violence, abuse, neglect and exploitation are multi layered and are influenced by experiences associated with, among other things, the person's race.
The Terms of Reference also direct us to have regard to the "particular situation" of Aboriginal and Torres Strait Islander people with disability. We read that direction as a recognition that the First Nations people of this country have a unique history, a unique culture, and a unique association with the land, as well as a recognition that First Nations people with disability face unique forms of disadvantage and unique challenge challenges.
Mr Griffin in his opening will refer to statistical data, but I would like to refer to some information that helps understand the issues we are examining. If we combine the results from the 2016 and 2021 Censuses of Population and Housing, it appears that there are about 66,000 First Nations people with a profound or severe disability, roughly 8 per cent of the First Nations population, totalling around 812,000 people, that is, about 3 per cent of the total population of Australia.
Of the 66,000 First Nations people with a profound or severe disability, about 11 per cent roughly 7,000 people usually reside in remote or very remote areas. The NDIS defines areas as remote or very remote based on a system that classifies regions into seven categories, depending upon their population size and isolation from capital cities. A recent report by National Disability Insurance Agency, the NDIA, indicates that as at March 2022, around 37,000 First Nations people with disability were NDIS participants.
That was an increase of about 260 per cent since 2018. In the same month, according to the NDIA, 8,000 NDIS participants lived in remote or very remote areas, and about half of these identified as Aboriginal or Torres Strait Islanders. These statistics, if they are accurate, mean that the current public hearing is considering the position of around 4,000 First Nations people with disability who are currently NDIS participants. The average annual support to First Nations NDIS participants in remote or very remote locations is $96,000, which is 41 per cent more than the average annual support for all First Nations NDIS participants. One of the themes of this hearing will be whether the funds that are allocated are being put to optimum advantage.
In addition to considering the position of First Nations people with disability who are participants in the NDIS, we shall also address the position of First Nations people with disability in remote and very remote areas who might be eligible to participate in the NDIS but whose applications to have a plan approved have been rejected. We know that First Nations people with disability are less likely to have their applications to become NDIS participants approved than non First Nations applicants.
34 per cent of NDIS applicants who disclose their First Nations status have been assessed as ineligible for the NDIS, compared to 28 per cent of applicants who said they were not First Nations people. We also know that applicants in remote and very remote areas are assessed as ineligible to participate in the NDIS, at a higher rate than applicants in the major cities. These figures perhaps suggest that some First Nations people with disability in remote and very remote areas are not being correctly assessed.
In addition, we have to take into account the extent to which First Nations people with disability are deterred or prevented from applying for participation in an NDIS plan or to obtain approval in the first place. We shall hear a good deal of evidence about the barriers facing First Nations people with disability in remote and very remote areas.
Mr Griffin will outline in some detail the nature of the evidence to be given over the course of this week, but, in broad terms, the fundamental issue at this hearing is whether the NDIS as governed by the National Disability Insurance Scheme Act 2013, and as administered by the NDIA, is achieving the desired outcomes for First Nations people with disability in remote and very remote areas. If the answer to this question is no, the next question is what should be done to ensure that First Nations people with disability in these areas receive the supports they need in a manner that is culturally appropriate and makes best use of the available resources.
There will be numerous statements tendered during the course of the week, and Mr Griffin will refer to these. And they will identify the barriers that prevent First Nations people with disability accessing the NDIS to the extent that appears to be warranted by their needs and by the statutory eligibility criteria. The statement by Ms Patricia Turner, the CEO of NACCHO, specified six major interconnected barriers. The first is the geographic extent of the remote areas and the relatively small populations of those areas.
Ms Kunmanara Smith and Ms Kim McRae of the NPYWC explain for example that the NPY Lands comprise 25 very remote communities across 350,000 square kilometres of semiarid country. The entire region is said to have a population of about 6,000 with an average of 200 in each community.
Secondly, the failure of markets in remote and very remote areas to provide the services necessary to support First Nations people with disability is identified by Ms Turner. This is usually referred to in the jargon as the problem of "thin markets." That is a technical expression which can be used in a variety of ways, but in the present context, it describes a situation where the available funded support services simply cannot meet the needs and entitlements of NDIS participants.
The third issue identified by Ms Turner are the difficulties facing First Nations people in navigating the NDIS system by reason of its complexity and bureaucratic nature, difficulties compounded, of course, by linguistic, cultural and literacy barriers. Fourthly, a lack of appropriate qualified and knowledgeable service providers in remote and very remote areas. Perhaps this can be regarded as another way of describing the difficulties created for the NDIS by thin markets in remote and very remote areas.
Next, a lack of culturally appropriate services and supports, for First Nations people with disability in remote and very remote areas. A number of witnesses will explain, for example, the fundamental importance for the wellbeing of First Nations people including, of course, First Nations people with disability that they maintain links with their community and with their country. This is something that is very difficult or impossible to achieve if the services and supports are only provided in regional centres or perhaps even in capital cities and little or no support is given for visits to country and community.
Finally, Ms Turner identifies the distrust experienced by many First Nations people towards what she describes as "institutional care." Distrust arising from both personal and historical experiences of First Nations people. This includes, as we have heard at other hearings, the history of colonisation and dispossession, racism, and intergenerational trauma that compound the distrust associated with endemic poverty in some areas and lack of decent housing in many remote communities.
In recounting the evidence of Ms Taylor that is to be given, I don't want to create the impression that Turner, I'm sorry; Ms Turner I do not want to create the impression that the NDIA is unaware of the issues that will be raised in the evidence, nor do I want to create the impression that the NDIA is unwilling to address those issues. We shall hear from senior representatives of the NDIA who will describe the various strategies that have been put in place to encourage innovative models of service delivery to First Nations with disability in remote and very remote areas.
These strategies include, as will be explained, the Rural and Remote Strategy, the Aboriginal and Torres Strait Islanders Engagement Strategy, the Cultural and Linguistic Diversity Strategy, and the Community Connecters Program. There may well be very different views about the effectiveness of these strategies and programs, but we do not approach the evidence of this hearing on the assumption that the NDIA is unsympathetic or unwilling to constructively respond to the issues raised by the evidence. Before taking appearances, I understand that Commissioner Mason wishes to make a statement.
COMMISSIONER MASON: Thank you, Chair. Later this week, we will hear evidence from the Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women's Council, including from Ms Kunmanara Margaret Smith. Before representatives of the NPY Women's Council give evidence, I wish to make a public statement. Before being appointed a Commissioner, I was the CEO of NPY Women's Council. This is recorded in my Conflict of Interest Declaration on the Royal Commission's website.
Ms Kunmanara Smith is also known to me. She is a Yankunytjatjara woman, and she my niece through my father, who was a Ngaanyatjarra man, Benjamin Mason MBE. Margaret's late father was my cousin. Since moving to Alice Springs in 2008, I have been in close contact with her and her family, both as a member of my extended family and as a long term director of NPY Women's Council.
I also take this opportunity to thank Kristy Bloomfield and Aunty Barbara Satour for their generous welcome to country and also pay my respects to all First Nations people, with and without disability attending the public hearing in person and following the public hearing online. Thank you, Chair.
CHAIR: Thank you very much, Commissioner Mason. I will now take appearances.
MR GRIFFIN: Chair, my name is Patrick Griffin. I'm assisted by Ms Avelina Tarrago and Ms Rebecca McMahon as your Counsel Assisting in this public hearing.
CHAIR: Thank you very much. I will take appearances from other parties, starting with parties who are represented in the hearing room, and I understand there is representation from the Commonwealth. Is that correct?
MR DIGHTON: If it please, Chair, my name is Dighton. I appear for the Commonwealth led by Mr Michael Hodge QC, instructed by Gilbert + Tobin.
CHAIR: Yes. Thank you, Mr Dighton. I think there is an appearance also for the Northern Territory.
MS CHALMERS: Yes. If it please, Chair, my name is Chalmers. I'm instructed by the Solicitor for the Northern Territory, and I seek leave to appear today.
CHAIR: Thank you, Ms Chalmers. That leave has been granted already so there is no need for a further grant of leave. Thank you very much. There are, I think, appearances to be announced remotely. Can we commence with the State of New South Wales?
MS FURNESS: Thank you, Chair. My name is Gail Furness, and I appear for the State of New South Wales instructed by the Crown Solicitor's Office.
CHAIR: Thank you, Ms Furness. An appearance for the State of Victoria.
MR CHESTERMAN: Thank you, Chair. My name is Scott Chesterman. I appear on behalf of the State of Victoria.
CHAIR: Thank you, Mr Chesterman. And the State of Queensland.
MS McMILLAN: Yes. Good morning, Chair. My name is McMillan, initials K.A. I appear with my learned junior, Ms Clohessy, instructed by Crown Law.
CHAIR: Thank you very much, Ms McMillan. Yes, Mr Griffin.
MR GRIFFIN: Royal Commissioners, we also acknowledge and pay our respects to the traditional custodians of the land which we are meeting today. We pay our respects to elders past present and emerging, as well as all First Nations people following this public hearing. Before addressing the issues to be explored in this hearing, I must mention to people watching or listening that, from time to time in public hearings, evidence may be given which may cause distress. It may involve neglect or exploitation of people with disability. The Royal Commission encourages people who may be distressed to seek support, and a slide will appear on the screen with the relevant contact numbers if assistance is required by anyone listening in.
Public hearing 25, Commissioners, will focus on the experience of First Nations people with disability living in remote and very remote communities with the National Disability Insurance Scheme, the NDIS. And during this opening, if I refer to "remote", that's taken to include remote and very remote communities. As the Chair has mentioned, this is the third public hearing dealing exclusively First Nations people with disability. Public hearing 8 examined the experience of First Nations people with disability and their families in contact with child protection systems. Public hearing 16 looked at First Nations children with disability in out of home care.
Work undertaken by the Commission indicates that there is no definitive statistic about the percentage of First Nations people with disability. It is likely that there are a number of First Nations people with disability in remote communities who would be eligible to participate in the NDIS but have not been granted access. There are limited NDIS providers in locations of the witnesses that will present evidence in this hearing.
The 2021 Census of Population and Housing conducted by the Australian Bureau of Statistics identified 66,360 First Nations people with a profound or severe disability, representing 8.2 per cent of all First Nations people. A 2016 census revealed that 11.6 per cent of those with a profound or severe disability usually resided in remote or very remote communities. These figures are broadly consistent with the 2018 19 ABS National Aboriginal Torres Strait Islander Health Service, which identified 8.1 per cent or 66,000 First Nations people with profound or severe disability, of which 8,600, or approximately 13 per cent, reside in remote communities.
As at 3 March of this year, only 3,916 of those were NDIS participants. On its surface, this suggests that a number of people who are possibly eligible for the NDIS are not accessing supports which would otherwise be available to them. The average annual support budget for First Nations NDIS participants in remote and very remote communities is $96,000, which is 41 per cent above the average for all First Nations participants Australia wide.
Only 66 per cent of First Nations applicants are accepted as being eligible for the NDIS, whilst 72 per cent of non First Nations applicants are deemed eligible. There are also geographical differences with remote applicants ineligible at a rate of 27 per cent higher than equivalent applicants residing in major cities.
Recently released data indicates that as of 31 March 2022, there were 37,313 NDIS participants who were First Nations people with disability, and about 10 per cent of those live in remote locations. Commissioners, I want to take you back to the Productivity Commission 2011 Inquiry Report. That report into Disability Care and Support highlighted key issues with the existing systems for the provision of disability support services. It predated the NDIS by some years.
The report found that disability support services in remote communities were either non existent or limited to basic care and allied health programs, and that these services were inadequate for the people with complex needs. The report also found that it was highly unlikely that any disability services would exist in remote communities in the absence of block funding. The report in 2011 attributed this to the absence of a competitive market for disability services, the social pressures which might impact some people who managed their own funds. These social pressures could manifest as a sense of obligation to family members in need or through coercion or humbuggery.
The term "humbug" is used in these communities to describe a person demanding money from another with no intention of repaying it. We will discuss during the public hearing, Commissioners, whether the issues highlighted in 2011 have been adequately addressed under the NDIS scheme.
The evidence to be given at this hearing will generally echo the Productivity Commission report's findings. The report will be echoed in First Nations people with disability from remote and very remote communities talking about the barriers they face when seeking to access and fully participate in the NDIS. It will examine whether those barriers cause or contribute to violence, abuse, neglect and exploitation of First Nations people with disability.
I'm going to put up on screen a map which is an overview of Northern Australia to indicate to those following this hearing the areas in which witnesses in this particular hearing come from, and you will see in broad terms, starting in Western Australia, we deal with Fitzroy Crossing in the Northern Territory with Tennant Creek and Gumbalanya up at the tip, east of Darwin. Alice Springs. You can see the NPY Lands outlined on that map. And then, moving to the right, you will see Far North Queensland, in particular, Thursday Island, Weipa and Cairns. And I will come back to that directly.
You will hear the lived experience evidence of witnesses from locations such as Fitzroy Crossing, Western Australia; Tennant Creek and Gumbalanya in the Northern Territory; and Thursday Island in Queensland. Evidence will be given by service providers from the Aboriginal community controlled organisations, peak bodies, and from the Australian Government. In particular during this hearing, evidence will be presented about, firstly, the accessibility of the NDIS to First Nations people living in remote and very remote communities, including whether information about the NDIS is being communicated effectively to and more importantly understood by participants in the scheme. And we will explore that issue.
We will look at the NDIA's planning processes and funding decisions, including whether funding and pricing arrangements take proper account of local factors and possible solutions. The second major area is the limited availability of NDIS providers in remote communities and the experience of First Nations people with disability who have to move away from their home country to receive NDIS services and supports.
Thirdly, the cultural competence and safety of staff working in the NDIA, Partners in Community and NDIS provider, including the impacts of cultural incompetence, the standards of cultural competency training that should apply and how though standards should be assessed. Fourthly, the role of Aboriginal community controlled organisations in the NDIS scheme. Fifthly, whether the NDIA's policies and programs have been effective in addressing barriers faced by First Nations people living in remote and very remote communities to accessing NDIS services and supports.
And, finally, whether and how the existence or absence of advocacy and self advocacy impacts on the ability of First Nations participants in remote and very remote communities to navigate the barriers to accessing the NDIS services and supports. Those general themes will be echoed in many of the witnesses you will hear. I now proceed to outline the witnesses who will be called and give a brief summary of their evidence.
The first witness, Daisy, will appear with Joziah. And you will hear from her lived experience, she being a Warumungu woman and mother to Joziah. Both Daisy and her son live with a disability. Daisy will share her experiences living in Tennant Creek. She will indicate her frustrations about the lack of supports and services in that community. She will speak about her experiences in being unable to move around the community due to having experienced delays in replacing her motorised scooter and the disrepair of her manual wheelchair.
Suffice it to say, Commissioners, a wheelchair suitable for the suburbs of Sydney, Melbourne or Brisbane, does not do well on gravel of the outback of Australia. Daisy will share her experience of Joziah moving away from Tennant Creek to get greater access of support and services. She will explain the impacts this has on her and her extended family.
The next witness today will be Joan, who is a non First Nations woman living in Alice Springs. She has a long history of working with Commonwealth and State departments. She first became a carer of First Nations children with disability in 2016 and currently cares for two such children with disability, one of whom is Joziah who I just mentioned. She will give a detailed summary of Joziah's background and her care of him. Based on that experience, in February 2021, Joan decided to establish her own company providing disability support services to Joziah and his cousin.
She decided to be non registered under the NDIS as a provider and engages sole traders or contractors to provide those services that she is unable to undertake herself. Joan will comment on her experience of the NDIS in the Northern Territory and its complexities. She expresses thoughtful views about issues such as group homes and housing, the pooling of equipment and the need for capacity building and more active case management under the scheme.
Finally, Joan will submit to you, Commissioners, that the person centred NDIS model would be more effective in remote communities if it were more community based. And that issue will be explored throughout this hearing.
The final witness today will be Jody Anne Barny. Jody Barney is a Deaf First Nations woman. In 2007, she founded a business known as the Deaf Indigenous Community Consultancy, which provides services to ensure effective communications between Deaf and hard of hearing First Nations people and various services or systems. This is achieved through interpreting a client's First Nations sign language system into Auslan, which is then interpreted or spoken into written English.
This is a highly specialised service and often involve clients with complex communication needs. 50 of her current 74 clients are located in the Northern Territory. As with Joan, she's elected to remain an unregistered provider because it allows her greater flexibility in service provision and involves a lesser administrative burden upon her.
Jody, I anticipate, will give evidence about the Deaf and hard of hearing community, whether the NDIS meets the cultural needs of this community, the reluctance of people to engage with the NDIS, the communication barriers created by the NDIS and their impacts, and the cultural competence of NDIS service providers. Finally, she will outline some suggestions based on her experience for changes to the system. Commissioners, Jody's long term aim is, to use the vernacular, do herself out of a job, and she will explain the thinking behind that.
On Tuesday morning, you will hear from Emily Sherwood, a First Nations woman with disability who lives in Tennant Creek. Emily will share her experience of living in Tennant Creek and the limited choices that she has because of living in a remote location. She will explain in detail how she feels unheard and that people who are supposed to support her do not have the patience to work with her. Emily will share her frustrations about the NDIA not understanding her needs, in particular, the need to maintain, repair and replace her mobility scooter for the conditions in remote locations such as Tennant Creek. She will also share her views about not having access to tools to give her greater independence, despite the fact that they have been recommended for her.
Emily will be followed by Beth Walker. Beth has been the Public Guardian and Trustee of the Northern Territory since 2016. She has an appointment until 2026. She has extensive experience in both government and non government sectors in areas of disability, aged care, mental health and child protection. The Office of the Public Guardian and Trustee, known as the OPGT, acts as a sole or joint guardian for 454 adult First Nations people with disability, and 2003 of these are First Nations people living in remote or very remote communities.
The OPGT is not a plan nominee. Ms Walker has extensive experience in the NDIS in relation to dealing with people in remote communities. I expect that she will provide valuable insights into issues such as the challenge of First Nations people in remote communities, reductions in funding for SIL, medical assistance, and return to country trips. Thirdly, the NDIS plan reviews and the OPGT advocacy for participants in those reviews.
Fourthly, support coordination, the difficulty in accessing the NDIS portal and, finally, will discuss the issue of supported decision making. She will illustrate the extensive experience she has by reference to two particular NDIS participants that her office has dealt with. Beth's evidence, I anticipate, will conclude with a discussion of six recommendations for the improvement of the NDIS that she has identified.
Can I have the map of Far North Queensland put up on screen. The next witnesses will be the Namok family. On Tuesday afternoon, you will hear from them, they being resident of the Torres Strait Islands community, and they will share their experience of their son and brother, Simeon Namok, known as Boyzie, following his stroke in December 2021. The Namok family is a prominent family in the Torres Strait with Boyzie's father being the creator of the Torres Strait Islander flag.
Boyzie was the first Torres Strait Islander person to have been diagnosed with rheumatic heart disease. The family will explain the importance of the Ailan life and how Boyzie wishes to return to his home on Thursday Island. They will share their frustrations with not being able to access information in their first language and the lack of meaningful communication with them about what the NDIS actually provides.
You will recall earlier, Commissioners, that I mentioned the communication between the NDIS and potential participants. In this hearing, we look particularly not only at how they seek to communicate information but, most importantly, do they have systems in place to satisfy them that what they are telling people is understood by those people? An area which, in the experience of those assisting you, Commissioners, is often overlooked.
We will then hear evidence from the NPY Women's Council. Commissioners will hear from Margaret Smith who I understand prefers to be known as Mrs Smith and Kim McRae from the NPY Women's Council. The council is an Anangu led organisation that delivers health, social and cultural services, including disability services. Mrs Smith is the deputy chairperson of the council and Kim McRae is the Tjungu Team Manager. The team have been providing disability services to people living on NPY Lands prior to the rollout of the NDIS and currently provides services to 130 people with disability across those lands.
NPY stands for Ngaanyatjarra, Pitjantjatjara and Yankunytjatjara, which are three of the prominent local languages spoken on those lands. Can I ask that the Central Australian map, Map 2, be placed on the screen? You will see highlighted in red the NPY Lands. They consist of 25 very remote communities spread over 350,000 kilometres of semiarid country. I am thankful to you, Commissioner, during the preparation for this hearing to indicate to me that the size of the whole of Germany is roughly the same size as the NPY Lands.
Indeed, if you put Victoria and Tasmania within those lands, there would be a large green margin around the outside. The lands are located across Western Australia, South Australia, and the Northern Territory. As the Chair has mentioned, the region has a population of around 6,000 people. Going back to the German analogy, Germany has a population of 84 million people in a land area the same.
There are an average of about 200 people in each community. And the communities experience poverty and limited access to goods and services, healthcare, and other services. Mrs Smith and Kim will share the key findings of their research of people with disability on the NPY Lands, particularly that they want to live in their communities on those lands with their family. They will also share the reasons why connecting to the NDIS and receiving disability support services in their communities on the lands is difficult.
And some of the reasons identified are the high cost involved, questions of housing and transport shortages, limited or non existent disability services, and language information and cultural barriers. The NPYWC advocate for a more flexible NDIS that responds to the needs of the people living on the NPY Lands: A scheme which is more family centred. They will emphasise the importance and acknowledging the challenges of improving the access to the NDIS and those services by properly investing in building a local workforce, what is often referred to, Commissioners, as capacity building.
It will raise an issue for your consideration not only in this hearing but before your final report, Commissioners, in whether spending more money on a family-centred approach would not only be more effective for the people concerned but may, in fact, be cheaper in dollar terms to the Australian community because of a reduction in allied health and criminal justice issues which often arise.
The following witness will Joanne Houghton. Joanne is a First Nations woman who is a founder and managing director of Creative Consulting. She started this business in 2018 and currently has 35 employees. 33 of those 35 are First Nations people. This business primarily provides support coordination services to NDIS participants in Far North Queensland. It has 94 current clients. Joanne will provide insights into the geographical challenge for a Cairns-based organisation providing support to First Nations people with disability, residing in remote communities.
If I can have the slide of Far North Queensland put up again. For example, Joanne will give evidence she's based in Cairns and does a considerable amount of work in Weipa, which you can see is on the western side of the Cape in the Gulf of Carpentaria. Those familiar with this part of Australia will recognise that during the wet season, road transport becomes impossible. In those circumstances, the alternatives one has are airline flights or the use of a barge to transport equipment.
So, if you look at that map, for example, Aurukun, which is south of Weipa on the map in the Gulf, is 880km from Cairns. And for Joanne, this is a 12-hour drive. It's inaccessible by road, as I said, during the wet season. Air travel is very expensive. If one wants to transport equipment by barge, you can start in Cairns, you can work your way all the way up the east coast to Thursday Island, to Bamaga and then work your way down to the communities in the Gulf.
It's something that your average urban-dwelling Australian would have very little understanding of the sheer logistics of trying to manage on a 12-monthly cycle, providing services to people in those areas. Joanne has also decided not to be registered because she finds the administrative burden is simply unworkable in her situation. She will suggest a number of changes which would improve the NDIS in areas of assessments and planning, service provision in remote communities, and in relation to the support coordination.
We will then move on to Western Australia and Fitzroy Crossing. And hear evidence from Geoff Davis and Marmingee Hand. This evidence to be given on Wednesday will commence with Geoff, who's a non-First Nations man, and Marmingee, a First Nations woman, who live in Fitzroy Crossing. Geoff was a teacher and has extensive experience in remote areas in sport and recreation administration. He's been on the local Shire Council for the past 12 years and is Tristan's carer.
Marmingee has been a teacher for many years and has a Masters degree in Indigenous Languages from the University of Sydney. As a couple, they have been together for 30 years and, during that time, have raised Marmingee's niece and nephew, Rani and Tristan, and her two grandsons Tylon and Quaden. Those people are now aged between 16 and 25. They all have a diagnosis of fetal alcohol spectrum disorder, known as FASD.
Historically, the Fitzroy Crossing region has been in a situation of having inadequate funding for disability services. The NDIS has made considerable funds available. Geoff and Marmingee will outline a number of concerns about access to and the use of those funds and suggest changes to better meet the needs of the people with disability in this region. Their issues, Commissioner, crystallise into a simple question, "Is the NDIS effective?"
Their evidence will be followed by Jazsikah, who is a Yawuru and Nimanburu woman from Broome. She lives outside of the town of Fitzroy Crossing with her partner and their family. Jazsikah will share the experiences of her two sons who live disability. She will speak about the complexities of navigating through the NDIS for First Nations people. She will share her experience of engaging with support services and the importance of being able to live on country, speak language and be amongst family. Jazsikah will share her beliefs and experiences of how the NDIA needs to have a local presence, be more flexible, and develop its understanding of the lives of First Nations people, particularly when living remotely.
Stella (Topsy) Jackamarra and Ronita Jackamarra will give evidence from the perspective of living in Fitzroy Crossing. Topsy will assist you, Commissioners, in sharing her journey supporting her adult daughter Ronita, who lives with a disability. Topsy also supports Ronita by caring for her three children, who have a range of behavioural challenges and medical issues. Topsy will particularly speak of the difficulties in understanding the complexity of the NDIS.
Ronita is a local radio announcer and is the longest-serving staff member of the radio station. She will tell you, Commissioners, about the multiple delays in accessing a new wheelchair and two different types of hoists which would assist her quality of life. Topsy will also share some of the challenges that she and Ronita face because of the delays and need for Topsy to move Ronita without the assistance of a hoist. Ronita also raises concerns about the lack of accessible transportation in Fitzroy Crossing and the lack of access to support services.
Their evidence will be followed by Mudge Bedford, a Bunuba man from Fitzroy Crossing. He's the father of seven children, two of whom live with disability. From time to time, he also cares for adult family members with disability. Mudge shares his understands of disability and how there is a lack of cultural understanding by the NDIA about how disability is viewed by First Nations people. He will also speak about the absence of NDIA locally, as well as the lack of adequate local disability support services to assist Fitzroy Valley community. Mudge explains how important culture is to First Nations people and how this is connected to their health and wellbeing.
After his evidence we move to the Marninwarntikura Women's Resource Centre. This evidence on Wednesday will conclude with you hearing from Emily Carter and Lauren Rice from the Women's Resource Centre. It's an Aboriginal-led organisation in the Fitzroy Valley and supports women and their families by encouraging safety and wellbeing and fosters leadership and financial independence.
In June 2020 the Centre commissioned was commissioned by the NDIA to undertake an intensive consultation with the Fitzroy Valley community. It produced a report entitled 'People Don't Know what Good Looks Like' Creating equity for people with disability in the Fitzroy Valley, which was finalised in September of 2021. Emily Carter and Lauren Rice will speak about the need for flexibility for First Nations people, and in particular those who live in remote communities like the Fitzroy Valley. They will share their views and experiences garnered from assisting those in the community with the complexities of the NDIS and the burden it places on communities like those in their valley.
They will share their views about the need for a local presence by the NDIA and how this should align with community and cultural expectations. They will explain the difficulties that the community faces concerning housing and access to adequate supports.
On Thursday morning, the Royal Commission will hear the journey of Paulette through her statement, which will be read out by Avelina Tarrago, Counsel Assisting. Paulette is a First peoples woman living with disability in the community of Gunbalanya. If I could have the Top End map, which is Map 4, put up again. You will see that whilst we try and sort out the correct map there we are. You will see in that map, if you take your eye to Darwin on the left side of the map and then move towards the east to Jabiru, the mining centre, and then furthermore remote is Gunbalanya, listed at the top. Gives you an idea of the distance and remoteness of the community.
Paulette will share her experience living with Machado Joseph disease, known as MJD, over the past few years and the impact it's had on her life. She will tell you in her statement that she's happiest when she's on country and able to access bush food and medicines. She also has the support of her family in Gunbalanya. She shares her experience of having to move to Darwin to get greater access to NDIS services and her sadness that her family could not stay with her in Darwin.
Her evidence will be followed by the First Peoples Disability Network, FDPN, which the Chair referred to in his opening. June Riemer, the Deputy CEO, and Damian Griffis, the CEO from First Peoples Disability Network will return to give evidence at this hearing, having given evidence at Public hearings 5 and 18. They will share aspects of their 10-point plan for the implementation of the NDIS in Aboriginal and Torres Strait Islander communities.
This plan includes a recommendation that government create and invest in an Aboriginal Community Controlled Disability Service Sector to provide support for Aboriginal and Torres Strait Islander communities, including remote communities. FPDN will explain that this capacity building is a means of overcoming a number of challenges to First Nations people in receiving the disability support they need, including the high costs of service delivery, cultural barriers, and the impact of negative interactions with First Nations people have had with government agencies of various descriptions.
June and Damian will conclude by addressing the need for strengthening the Closing the Gap targets to support disability outcomes.
Commissioners, you will then have the benefit of a panel of witnesses from NACCHO, KAMS and BRAMS. You will hear in particular from Pat Turner, that the Chair has referred to, the CEO of the National Aboriginal Community Controlled Health Organisation, known as NACCHO; Jenny Bedford, the Chief Operating Officer of the Kimberley Aboriginal Medical Service, known as KAMS; and Cassie Atchison, the CEO of the Broome Regional Aboriginal Medical Service, known as BRAMS.
NACCHO is the national peak body representing 144 Aboriginal Community Controlled Organisations, known collectively as ACCHOs. To assist to understand the size of the Kimberley region and the remoteness of its communities, the region covers 423,000 square kilometres, with the two major towns of Broome and Kununurra located an eye boggling 2,200km and 5,200 kilometres from Perth, respectively. There are more than 100 remote Aboriginal communities throughout the area, each with varying populations. The region has a total population of about 36,500 residents. 44 per cent of these are First Nations people. There are at least 50 distinct language groups in the Kimberley region.
The panel of witnesses will inform the Royal Commission about systemic issues which prevent or discourage Aboriginal and Torres Strait Islanders people from accessing the NDIS and disability services in remote communities. Some of these particular problems are, firstly, the geography, such as cost of delivery of services in remote areas; secondly, the operation of the scheme, including its complexity; and, thirdly, factors particular to the experience of First Nations people, including the unique needs of First Nations participants not being met in many instances because of inadequate cultural competence of NDIA staff and of mainstream services.
Of course, Commissioners, a number of these issues are interrelated. NACCHO will explain that First Nations people with disability in remote communities express a clear preference to be supported by ACCHOs and ACCOs, which is the Aboriginal community-controlled organisations. I apologise to the listening audience for the number of acronyms, but you will become familiar with of the week. They will give evidence that the ACCHOS as and ACCOs are best placed to provide these services, and advocate that capacity building which supports an ACCHO led approach is required to improve outcomes for First Nations people in these communities.
In support of NACCHO’s call for capacity building of ACCHOs and ACCOs to provide disability support services, the Commission will hear about the positive services achieved by KAMS and BRAMS in supporting NDIS participants in thin markets through a range of program, working in partnership with NDIA to improve equality of access to the of the NDIS. Both KAMS and BRAMS stress the need for a locally based Aboriginal disability workforce to be created and maintained. NACCHOs will provide detailed recommendations in relation to the operation of the NDIS, but also advocate the importance of structural reform.
Can I pause now and deal with the issue of witness protections which is general to all public hearings of this Royal Commission. I take this opportunity to remind anyone following the hearing of the protections afforded to Royal Commission witnesses. First, section 61 of the Royal Commissions Act 1902 (Commonwealth) makes it an offence for any person to publish information that might enable the identification of a witness who is the subject of a Royal Commission direction. These include all witnesses granted the pseudonyms at this hearing.
Second, section 6M of the Royal Commissions Act 1902 makes it an offence for any person to use, cause, or inflict any violence, punishment, damage, loss or disadvantage to a witness who has provided evidence to the Royal Commission for or on account of that evidence. That, Commissioners, is last time I will speak in legalese during this opening.
The final witness, as indicated by the Chair, are Kitsa Papadopoulos and Scott McNaughton from the NDIA. Kitsa Papadopoulos is the Branch Manager, Market Intervention and Commissioning for the NDIA. She has not previously given of given evidence to the Royal Commission. For the purposes of this hearing, she has produced under notice a written statement which responds to questions from the Commission covering eight discrete issues.
Scott McNaughton, on the other hand, is the General Manager, National Delivery for the NDIA. He has previously given evidence to the Royal Commission in three public hearings, namely, Public hearing 13, Preventing and Responding to Violence, Abuse, Neglect and Exploitation in Disability Services, known as the Sunnyfield hearing; Public hearing 15, people with cognitive disability and the criminal justice system; and, finally, Public hearing 20, Preventing and Responding to Violence, Abuse, Neglect and Exploitation in Disability Services, known as the Life Without Barriers hearing. For this hearing, he has produced under notice a written statement which responds to questions from the Commission, covering 24 discrete issues.
Can I draw this opening together by way of a summary, Commissioners. We will be examining a cross-section of the lived experience of First Nations people in diverse communities from the Fitzroy Valley in Western Australia, Tennant Creek and Gunbalanya in the Northern Territory, and Thursday Island in Queensland. Information relating to other locations in these areas will flow from the primary evidence. The barriers to people with disability in these remote locations receiving adequate supports will be examined.
And we propose to look at the barriers in the following categories: The first category is barriers arising out of the context of the lives of First Nations people living in remote communities. And that will include such matters as social and economic disadvantage, lack of housing and poverty, First Nations concepts of what health and disability mean, and, finally, previous negative experience of these people with government agencies. It's difficult, Commissioners, to get a real handle on the extent to which people's unsatisfactory previous dealings with government agencies might be inhibiting them from engaging with the NDIS, as a factor to take into account.
The second category of barriers is barriers to accessing the scheme. And in that, we include the lack of information about the NDIS; secondly, the information not being explained in a culturally appropriate way or in a First Nations language; and, thirdly, difficulties in obtaining assessments which are an integral part of the NDIS scheme.
The third category of barriers we propose to look at, are barriers faced during planning. And they include the complexity of NDIS and its apparent lack of flexibility, the limited face to face engagement with NDIA planners, and inadequate cultural safety and cultural competence amongst NDIA staff. The fourth and final category of barriers relates to the using of NDIS funds. And particularly we will look at the inadequate or lack of disability services and canvass the issue the Chair raised about so called thin markets. And, secondly, what appears to be unreasonable delays in the delivery of equipment to people in these communities.
When one looks at that summary, the overriding question facing you as Commissioners is whether the operation of the NDIS in remote and very remote communities is fit for purpose. And if you form a preliminary view, it may not be fit for purpose, how can we make recommendations or suggestions to those that run the scheme as to how it may be changed. There are a whole spectrum of ideas which will emerge from the witnesses relating to that issue.
Can I deal with some procedural matters, Commissioners? The question of procedural fairness and the tendering of documents. Commissioners, you are committed to ensuring this hearing is conducted fairly and that all parties given leave to appear, and all people adversely mentioned in the evidence in this hearing should have the opportunity to be heard and to respond to the issues we examine. Chair, you will make directions at the conclusion of this hearing as to how you wish Counsel Assisting to prepare any written or oral submissions on the evidence and how parties with leave to appear and any others may respond to any findings proposed in those submissions.
In addition, as has been the case in previous hearings, the Royal Commission has received extensive documentary records in the course of preparing for this public hearing. Some of these records will be discussed during the hearing. However, the formal tendering of documents into evidence will be done following the conclusion of the oral presentation of the evidence this week. This will allow for any redactions that need to be made in order to protect the identity of any person requiring that protection and to address other concerns raised by parties with leave in this hearing.
All this will occur prior to the public release of any documents. I thank you, Commissioners. It may be appropriate to adjourn briefly. Immediately after the break, Ms Tarrago of counsel will examine the first witness, Daisy.
CHAIR: Yes. Thank you very much, Mr Griffin. It is now just after 11.30 Central Time. Would it be convenient to adjourn until 11.50?
MR GRIFFIN: It has to be 12 o'clock due to other arrangements.
CHAIR: 12 o'clock. Yes. All right. We will adjourn now until 12 o'clock, and then we will resume, and Ms Tarrago will take the first witness. Thank you.
<ADJOURNED 11:32 AM
<RESUMED 12:05 PM
CHAIR: Yes, Ms Tarrago.
MS TARRAGO: Thank you, Chair.
CHAIR: There you are. I'm sorry. I was looking in the wrong place.
MS TARRAGO: Commissioners, our first witness we will be hearing from is Daisy, a pseudonym, and sitting next to Daisy is her 18-year-old son, Joziah, a pseudonym. I draw attention to the pseudonym direction, CTH DNP 00136, that is in place in relation to the identities of certain individuals, including Daisy and Joziah. Ms Amelia Gilroy of the Northern Territory Legal Aid is appearing on behalf of Daisy for the duration of her evidence. Daisy has provided a statement for this public hearing, dated 21 June 2022. And this statement is in Hearing Bundle A, tab 1. Annexures to Daisy's statement are at Hearing Bundle A, tabs 2 to 7. Daisy has already taken an oath prior to the commencement of her evidence.
CHAIR: Daisy, can I thank you very much indeed for coming to the Royal Commission today to give evidence. We are very grateful to you for coming to us and telling us of your experiences and also for providing the statement that you have, which we have all read very carefully. Joziah, thank you very much also for coming to the Commission and being here today. We appreciate your help to the Royal Commission as well. So thank you so much. Yes, Ms Tarrago.
MS TARRAGO: Daisy, you have given a statement already?
MS TARRAGO: And the things in your statement, are they true and correct?
MS TARRAGO: And you're a Warumungu woman?
MS TARRAGO: And you're also a speaker for
MS TARRAGO: You live in Tennant Creek with your family?
MS TARRAGO: And you are a mum?
MS TARRAGO: How many children do you have?
MS TARRAGO: And Joziah here is one of your children?
MS TARRAGO: And Joziah lives with a disability?
MS TARRAGO: And this year you celebrated his 18th birthday?
MS TARRAGO: And was that here in Alice Springs?
MS TARRAGO: And was it you and your partner were able to come down for his birthday?
MS TARRAGO: Joziah lives in Alice Springs now?
MS TARRAGO: Do you remember how long ago he might have
DAISY: I don't know.
MS TARRAGO: After a little while, he's been here?
MS TARRAGO: And Joziah moved here so he could get access to more services that to support him and his life?
MS TARRAGO: So, in Tennant Creek, there weren't as many things for him to do?
DAISY: Yeah, nothing. Yeah.
MS TARRAGO: And was one of those things speech therapy?
MS TARRAGO: So, you wanted to make sure he could get access to that?
MS TARRAGO: And now he's in Alice Springs, he can get access to not only speech therapy, but he's got a job?
MS TARRAGO: And also able to do things like physiotherapy and
MS TARRAGO: go swimming.
MS TARRAGO: So, before he moved to Alice Springs, was it difficult for you and him up in Tennant Creek?
MS TARRAGO: Yes. Did you have a lot of help at home there?
DAISY: No, not much.
MS TARRAGO: And were family helping you sometimes?
MS TARRAGO: And did they get paid for that?
MS TARRAGO: If you just wait a moment. When Joziah was in Tennant Creek, he had a little house and some carers that were supporting him?
MS TARRAGO: Do you remember how long that was for?
MS TARRAGO: No. But did you think that was good that he was able to live in that house and have that support?
MS TARRAGO: And he was able to be in the community, but he had his own space?
MS TARRAGO: Does it sometimes get a little bit busy at home for you, a lot of people in and out at home?
MS TARRAGO: So it was important for Joziah to have some quiet space?
MS TARRAGO: But he couldn't stay in that house for very long, and was it after that that you thought it was better for him to come to Alice Springs?
MS TARRAGO: But you all miss him very much.
MS TARRAGO: And do you get to come down and visit with Joziah often? Or is it only sometimes you get to see him?
DAISY: Yeah, sometimes.
MS TARRAGO: And it's a long way between Tennant Creek and Alice Springs?
MS TARRAGO: Do you have to wait for someone to drive you down? Or do you catch the bus to come to Alice Springs?
DAISY: Someone, like, driving me down.
MS TARRAGO: And you prefer that?
MS TARRAGO: So, it's very good to see you together
MS TARRAGO: here today, yeah. Now, Daisy, you also live with a disability.
MS TARRAGO: And you get some support from the NDIS as well.
MS TARRAGO: Do you remember knowing about the NDIS before you signed up for it? No?
DAISY: I don't know. I can't
MS TARRAGO: Do you remember when the NDIS people come into Tennant Creek?
MS TARRAGO: Yeah. Were they wearing purple shirts?
MS TARRAGO: And did they have a little office there in Tennant Creek in town?
MS TARRAGO: And were you able to go into that office and sit down and talk to people?
MS TARRAGO: Do you like that set up, that you can go into an office and sit down and yarn with people?
MS TARRAGO: What about now? Is there an office there?
DAISY: No, nothing.
MS TARRAGO: Nothing.
DAISY: I don't know where they went.
MS TARRAGO: And do you have to phone up or is there someone who can help you in Tennant Creek from the NDIS? You don't know?
MS TARRAGO: That's okay. Would you prefer if they had an office there again?
MS TARRAGO: And is that because you prefer to get to know people and feel more comfortable when you can when you know them. You can yarn with them?
MS TARRAGO: Did they used to change people all the time in that office? Was there one person that you used to sit down and talk with, or lots of different people?
DAISY: Lots of different people.
MS TARRAGO: Yeah, but would you prefer one person that you can talk to?
MS TARRAGO: Yeah. And when you went in, do you remember having a plan where they told you how much money was in your plan and what you could use it for?
MS TARRAGO: And did you think that was a good thing, that you could sit down and see how much money was there?
MS TARRAGO: What about now? Do you know how much is in your plan?
DAISY: No, I don't know.
MS TARRAGO: And would you like to know?
MS TARRAGO: And why why is that? What would you like to do with your plan money? Would you like to be able to choose what you use it for?
MS TARRAGO: And for things like a wheelchair.
MS TARRAGO: A motor scooter.
DAISY: Yep. Yeah.
MS TARRAGO: And you know then, 'I have a choice to say what things I have to support me.' Would you like to do that face to face with somebody so that they are in Tennant Creek?
MS TARRAGO: So, you can just go into an office. All the time, they would be there in Tennant Creek.
MS TARRAGO: But now you don't know where to go.
MS TARRAGO: At the moment, you you are getting some support from someone, but they're not in Tennant Creek.
MS TARRAGO: They're in another city.
MS TARRAGO: Do they come to Tennant Creek often? Or only sometimes?
MS TARRAGO: And, again, you prefer them to be in Tennant Creek?
MS TARRAGO: So that, like we are today, face to face.
MS TARRAGO: I just want to talk a little bit about your wheelchair and the scooter. You've got a manual wheelchair that you're with here today?
MS TARRAGO: And you've been having some troubles with it. You've got an arm rest that's a bit scratchy.
MS TARRAGO: Yeah, can you tell me a bit about that? What's wrong with it?
DAISY: It's, like, scratching my arm.
MS TARRAGO: Has it got cracks in it?
DAISY: Yeah, that's why I wear this jumper.
MS TARRAGO: And so, you wear jumpers so that it doesn't
MS TARRAGO: It doesn't hurt your arm?
MS TARRAGO: And on the arm rest, you have to put some tape on it so
MS TARRAGO: Is that so it doesn't scratch you?
DAISY: Yeah. Yeah.
MS TARRAGO: So, what I'm going to do, I'm going to ask the operator to display Doc ID DRC.999.0129.008. So over there is a screen. Can you see? Or is it too far away?
DAISY: Too far away.
MS TARRAGO: Too far. So just on the screen is a photo of your armrest with the cracks in it. Just so people who might be listening can see what we're talking about and why that's scratching underneath your arm.
DAISY: Yeah. Yeah.
MS TARRAGO: Thank you. The next photograph which I will ask the operator to display is Daisy in her wheelchair. So, can you see that?
MS TARRAGO: So, that's you back home in Tennant Creek in your wheelchair? Yes. And that's the the profile of that photo, so the way you're sitting, it shows the armrest with those cracks and the tape on it.
MS TARRAGO: Yeah. So that's the arm that you say is scratchy. Thank you, operator. How long has your wheelchair been like that for? A long time?
DAISY: Yeah, a long time, I think. Yeah.
MS TARRAGO: Years or months?
DAISY: I don't know.
MS TARRAGO: You don't know.
MS TARRAGO: Was it like that last month or longer?
DAISY: Yeah. Well, I don't know.
MS TARRAGO: And at home, if you don't have your scooter, the only way you get around is in your manual wheelchair?
MS TARRAGO: And is it easy to get into town if you're on your own? Or do you have to stay at home?
DAISY: Stay home.
MS TARRAGO: Yeah.
DAISY: And wait for someone to push me.
MS TARRAGO: So, you've got to wait, yeah. And you've only just received your new electric scooter.
MS TARRAGO: Yeah. And you're enjoying that at the moment?
MS TARRAGO: Has it given you bit of independence to go around town?
MS TARRAGO: And you don't have to rely on anybody?
MS TARRAGO: And you don't have to wait for anyone to push you?
MS TARRAGO: But you didn't have a scooter for a little while. And there was something wrong with the old one. Can you tell the Commissioners what happened to that scooter?
DAISY: I don't know. Probably battery.
MS TARRAGO: The battery.
MS TARRAGO: And was it the case that when you were in the scooter driving, you hit a bump and the battery would stop?
MS TARRAGO: So, then you were stuck.
MS TARRAGO: And we were talking about one time when you were on your own.
MS TARRAGO: But lucky family had come past.
MS TARRAGO: And what did they do?
DAISY: Took they pull over and help me push the scooter up.
MS TARRAGO: Yeah. So, you had to wait for family. Just lucky that they came by that day.
MS TARRAGO: Did it make you worry that maybe you might get stuck some days?
MS TARRAGO: And with your scooter, is it easy to get up to town from home? To the shops?
DAISY: Yep, yep.
MS TARRAGO: Because if you didn't have your scooter, is there a bus around town that you are able to use?
DAISY: Yeah, bus around, but I don't really like it.
MS TARRAGO: It takes a long time to come.
MS TARRAGO: So, you prefer to have independence where you can go on the electric scooter?
MS TARRAGO: And what about when you we talked a little bit before about coming to places like here, Alice Springs. And you said you didn't you prefer to be in the car.
MS TARRAGO: But there is a bus that comes from Tennant Creek to Alice Springs? But it doesn't have a lift or anything like that?
DAISY: Yeah, no.
MS TARRAGO: So, it's not very easy.
MS TARRAGO: Back home in Tennant, are there some places that you would like to go to, but you can't because it's a little bit too far away in the scooter?
MS TARRAGO: Yeah. Is that the dam?
MS TARRAGO: And you like going to the dam?
MS TARRAGO: Because it's peaceful out there, isn't it?
MS TARRAGO: But you have to wait for family and friends to take you in the car.
MS TARRAGO: And would you like if you had some support to get to the dam, would you like to spend some more time there?
MS TARRAGO: Yeah. Operator can we please display photo, doc ID DRC.9999.0129.0002. Do you see that photo? Is that the photo of the dam?
MS TARRAGO: Yeah. So really peaceful place for you to spend time.
DAISY: Yeah. Yeah.
MS TARRAGO: Yeah. Thank you, operator. I would like to talk to you about respite. Do you get to have any respite at the moment?
MS TARRAGO: And do you know why you can't have respite at the moment? Any reason?
MS TARRAGO: No?
MS TARRAGO: Would it be good to have respite?
MS TARRAGO: And if you could choose what kind of respite or where you could go, where would you where would you go and have respite? Would you want to spend time with Joziah?
MS TARRAGO: So you might want to come to Alice Springs?
MS TARRAGO: Would you like maybe Joziah to come back home to have respite with you at home?
MS TARRAGO: So you would like to have some options
MS TARRAGO: about what you could do. And it's also important that you are able to have some medical things like have renal when you go on respite as well?
MS TARRAGO: Yeah. So it's really important that wherever you go, you can still have that treatment.
MS TARRAGO: And has anyone talked to you about respite? No?
MS TARRAGO: And do you know if anyone's told you how much money might be in your plan to do respite?
MS TARRAGO: No. So the big bosses who might be listening today, if you could change things, what would you want them to do, if you could tell them? Would you want better transport?
MS TARRAGO: And would that be in and out of town?
MS TARRAGO: So transport to get around Tennant Creek but also transport to go to places like where we are, Alice Springs?
MS TARRAGO: Or Darwin?
MS TARRAGO: And would you like transport that a bus that would be able to help people with disabilities?
MS TARRAGO: That would be important?
MS TARRAGO: And what about more support services in Tennant Creek? What kind of things would you like to make sure they are in Tennant Creek? Would you want physiotherapy?
MS TARRAGO: And occupational therapy?
MS TARRAGO: And more doctors and nurses?
MS TARRAGO: And do you think if they had more services in Tennant Creek like that, then maybe Joziah might be able to come back home?
MS TARRAGO: Yeah. Would that be good?
MS TARRAGO: Yeah. And what about the houses in Tennant Creek? Are there a lot of houses for people with disability?
DAISY: Not much house.
MS TARRAGO: Like a lot of houses with ramps or do they mostly don't have ramps?
DAISY: No. I think they don't have ramps.
MS TARRAGO: Okay. And what about handrails? So you can hang on?
DAISY: No, nothing.
MS TARRAGO: Nothing. Is there anything else that you wanted to tell the big bosses? No. Thank you, Daisy. Thank you, Joziah. Thank you, Chair.
CHAIR: Thank you very much. Just pardon me one moment. Daisy and Joziah, thank you so much for coming from Tennant Creek to Alice Springs to give evidence. I hope that your trip here was comfortable, and I hope your trip back will be very comfortable as well. So thank you for giving evidence today and we as I said before, we have read your statement and we understand the things that you wanted to explain to us. So thank you very much.
CHAIR: Shall we now take an adjournment, Ms Tarrago?
MS TARRAGO: Yes, thank you, Chair. I believe it is a lunch adjournment, and on the schedule, we are due to return back at 2 pm.
CHAIR: So we are going to take a very long lunch, I think?
MS TARRAGO: Yes, unless I have any direction otherwise.
CHAIR: Okay. Well, we will adjourn until 2 pm, in that case. So thank you again.
<ADJOURNED 12:28 PM
<RESUMED 2:01 PM
CHAIR: Yes, Mr Griffin.
MR GRIFFIN: Chair, the next witness is Joan, the carer of Joziah, whose mother Daisy gave evidence before lunch. Joan has provided a statement to the hearing dated 22 June 2021, bearing identification number STAT.0562.0001.0001. This statement is in Hearing Bundle A at tab 8, the annexures to Joan's statement are at Hearing Bundle A at tabs 9 to 11. Joan will make an affirmation.
CHAIR: Thank you very much. Joan, thank you if I may refer to you as such, thank you very much for coming to the Royal Commission, even though you didn't have quite as far to go as some of our other witnesses. We do appreciate your assistance to the Commission. We have received the statement that you have made and, of course, we have read that very carefully. If you would be good enough to follow the instructions of my associate, who is somewhere. She's over there. She will administer the affirmation. Thank you.
CHAIR: Thank you very much. Now I will ask Mr Griffin to ask you some questions.
<EXAMINATION BY MR GRIFFIN SC
MR GRIFFIN: Joan, I propose to ask you some questions about your background and Joziah's history, and I am doing so in order to set the context for comments you will make later on in relation to your impressions of the NDIS and how you think the Commissioners might look at suggesting improvements to how it operates. You first moved to the Northern Territory in 2011.
JOAN: That's correct.
MR GRIFFIN: You lived for some time in Tennant Creek and you now live in Alice Springs?
JOAN: That's correct
MR GRIFFIN: You spent a career working in government and non government roles with a focus on workforce development?
JOAN: That's correct.
MR GRIFFIN: And you've worked in the disability sector since 2015?
JOAN: That would be incorrect. It would be 2011 when I first started.
MR GRIFFIN: Thank you. And where you are currently employed in terms of what type of work do you do?
JOAN: So I currently work for a large non government organisation who deliver community services to Aboriginal communities and also the mainstream communities here in Alice Springs and in the APY Lands and across Central Australia.
MR GRIFFIN: Have you been in that type of employment for a little while now?
MR GRIFFIN: Are you also studying?
JOAN: Yes. I'm studying to be an occupational therapist. Studying a Master's of Occupational Therapy and Bachelor of Health Science at Charles Darwin University.
MR GRIFFIN: And how far through those studies are you at the moment?
JOAN: Three years
MR GRIFFIN: And when will you conclude them?
JOAN: Probably in another three years' time
MR GRIFFIN: Exams willing and all?
MR GRIFFIN: Now, in addition to that considerable workload, you also take care of Joziah?
JOAN: That's correct.
MR GRIFFIN: How did Joziah come into your care?
JOAN: So, I first met Joziah in and around 2015, when I was working up in the Barkly in Tennant Creek itself and living there. And I met him through a mutual friend, and he came he came to know me through the football, going down to the football, and consequently through a number of events that were held in the Barkly to promote the NDIS coming to Tennant Creek and being, I suppose, delivered as one of the trial sites for the NDIS.
MR GRIFFIN: And Joziah has various disabilities?
JOAN: That's correct. He
MR GRIFFIN: Can you explain to the Commissioners in broad terms the nature of the conditions that Joziah has?
JOAN: Joziah relies solely on a wheelchair, the mobility of a wheelchair. And in instances where it is that he can't push himself, he relies on an electric wheelchair that he can move around. But often that either is not serviceable or needs servicing. And and, additionally, there needs to be people that can actually back him up in terms of pushing him when it gets to a point of being either too hot in this environment or if it is that he needs to go over terrain that he can't navigate himself.
He has quadriplegia, and, to that extent, there are other conditions that he has, such as dysphagia. So, he has difficulty swallowing and, for that reason, he has a need to have special food prepared for him so that he can cope with swallowing. And also, for him to be observed while he is swallowing and drinking so that he can't he doesn't choke. And as well as that, he has dislocated hips and so that restricts also the level of movement that he has with his legs. And he needs additional physiotherapy for that reason.
MR GRIFFIN: What was Joziah's life like when he lived in Tennant Creek?
JOAN: Joziah led a very active life because he's quite sociable. And he's a really likeable fellow. And he's really loved by the community. He has the ability to just light up a room with his smile and, you know, for all intents and purposes, he could bring world peace if he was put in a room of warring parties. He he engaged with community, and he was a very active person, always wanting to be out at the football, always wanting to be out doing things with other people. And always wanting to be you know, I will call him the centre of attention, but, really, he was just always wanting to be doing things.
MR GRIFFIN: So
JOAN: But he was challenged, because he was being serviced in an aged care facility and, consequently, when the NDIA came to town, he was a little bit of a poster boy for them in that they had him beamed up in a big photo on all of their pamphlets selling the wares of the NDIA and how it could make a difference in people's lives. It was really quite disturbing, then, to know that Joziah moved into from the aged care facility, supported by the NDIA, into another house that he was supported in but then consequently things started to change for him after a number of years.
MR GRIFFIN: Can I go back to when he was in the aged care facility. Was he the only person of his age in that facility?
JOAN: Yes, he was.
MR GRIFFIN: And did that present difficulties for him?
JOAN: Yes, he was completely isolated from his peers and he was completely dislocated from everything that was sociable about being in with his peers of his own age and being able to engage in the activities that they were. So he was in the aged care facility getting services from them and being surrounded by old people and aged people who were, you know, just although it is that he would have engaged with them, it just wasn't his peer group.
MR GRIFFIN: And did you say he then moved into a group home setting?
JOAN: It was a group home setting, but it wasn't a group home, as such. He was by himself with other children that would come and go for respite, for instance.
MR GRIFFIN: And where was that located?
JOAN: It was located virtually in the middle of town in Tennant Creek.
MR GRIFFIN: And did that occur after the NDIA came to town, as you say?
JOAN: Yes, it did.
CHAIR: What prompted that change of location for Joziah?
JOAN: So, Joziah was living with his mother Daisy, and, consequently, it was promoted that the NDIA would offer him supported independent living, which they did, and they funded him for it. And he was moved into that house, and he was being supported and being supported to access the community and his peers and go to school, do all of the things that another, you know, young man could be doing.
MR GRIFFIN: That seemed promising at the time?
JOAN: Remarkably. It meant a huge change. So Daisy was able to access him, was able to visit him. They would have dinners together. All of those types of things that normal families do. There was obviously that she wasn't living there with him, but she had full access to him.
MR GRIFFIN: Joan, what happened?
JOAN: The agency decided that they would withdraw funding from him from his SIL, from his supported independent living. And in doing so, it meant that he was going to be without a home. And, consequently, they made a mandatory report to Territory Families and had him removed from his child from his mother, effectively, from that SIL accommodation. And he was then in underneath the delegation of the CEO of Territory Families.
MR GRIFFIN: What was your understanding as to why the funding was withdrawn?
JOAN: My understanding is that it was because it was unsustainable and that it was of considerable cost to the agency, but they had made that promise, which is just you know, they gave it to him, and I think it was probably over a year that he was within that group in that SIL accommodation and with that funding. But then they decided, and they made a call to one of the managers of one of the disability service providers that was looking after him and they said, "We are going to make a mandatory report. We are withdrawing his funding and we are making a mandatory report so that he can be taken from his mum."
MR GRIFFIN: And what happened to Joziah when that occurred?
JOAN: He became what would always be regarded as part of a Stolen Generation, even now when it is that people young people, children, are being taken from Aboriginal families.
MR GRIFFIN: Did he remain in Tennant Creek?
JOAN: He did remain in Tennant Creek. He was in the home, the same home that he was in before, but the funding arrangement was different. So, there was a deal done with Territory Families to be able to fund his accommodation while his disability supports, and things were funded by the agency. But even then, his expenditure wasn't being expended.
MR GRIFFIN: So, there was provision in a plan that wasn't being utilised?
JOAN: That's correct.
MR GRIFFIN: And to what extent were funds in the plan not being able to be used?
JOAN: I couldn't make comment on that in terms of because I don't have the evidence in front of me. But in terms of that, he wasn't receiving physiotherapy because of the fact that he was unable to access it at the location where we were in terms of Tennant Creek because of the intermittent service delivery, and the local ACCHO which was the community health organisation, the Aboriginal one wasn't being able to deliver allied health because of they had different funding. So they were funded through Health to be able to deliver services for allied health, physiotherapy, but the Aboriginal Health Organisation weren't delivering NDIS services at the same time.
MR GRIFFIN: Looking back on that time, is there anything the authorities could have done to make Joziah's life different?
JOAN: They could have certainly assisted the Aboriginal Health Organisation greater to be able to deal between the funding that they were receiving from Health and being able to bill against their NDIS plan in terms of his plan and others.
MR GRIFFIN: Do you know whether that suggestion was made at the time or not?
JOAN: Yes, I do.
MR GRIFFIN: Who made the suggestion and what was the result?
JOAN: It was discussed at a local area meeting that was being because of the trial site itself, there were a group of people interested parties from different agencies, different service providers who were articulating to the agency that there needed to be more assistance given to the health organisation to bring in those services for people with a disability.
MR GRIFFIN: It sounds like that there was a degree of enthusiasm and goodwill towards that resolution. Why didn't it happen?
JOAN: There was an initial amount of funding provided to the health organisation, but it wasn't enough to be able to continue it. I think if we think about Aboriginal communities, they don't know what they don't know. And, consequently, the take up of some of the things some of the offerings such as physiotherapy were a complex sort of construct for Aboriginal families to absorb how they would integrate into their lives. And, consequently, it meant that more time needed to be given to the Aboriginal Health Organisation to be able to adopt the new different systems, different way of being, different way of offering services, and that wasn't extended by the agency.
MR GRIFFIN: Is it the case that that process was a little rushed and people didn't think through what the potential options were?
CHAIR: Can I make sure I understand the changes that occurred. Joziah remained in the same place that he had been residing in under the SIL funding arrangement.
CHAIR: But the SIL funding arrangement had been terminated by the NDIA. So how was it that Joziah was able to stay in the same accommodation? Who which organisation, if any, provided funding for that purpose?
JOAN: Territory Families then funded it.
CHAIR: And was that a consequence of Joziah effectively being placed in care?
JOAN: That's correct.
CHAIR: So, they took over the responsibility for providing him with accommodation?
JOAN: That's right.
CHAIR: You said, I think, that this meant that he became more isolated. What was the difficulty about Joziah being in the same place, having a connection with his family, his community and so on?
JOAN: Because you had another interfacing what I would call an interfacing agency such as Territory Families, another government body who were there acting as the parent. And they were the ones that controlled the people being able to come to the house or not go to the house.
CHAIR: So, it was the change, as it were, back to the Territory as the responsible entity from the NDIA that led to this isolation?
JOAN: That's correct.
CHAIR: Thank you.
MR GRIFFIN: Joan, you recall in conference I discussed the use of the word "interfacing." For those people listening to this public hearing, is a simple definition it's one government mob talking to another government mob?
JOAN: That would be correct, yes.
MR GRIFFIN: Okay. And in this particular case, the two government mobs, one Territory and one Commonwealth, had the sorts of interaction that you described?
JOAN: Yeah, they had the interaction, but they had it without any consultation with Daisy, no consultation with any advocates that could be brought in to talk with Daisy about what the implications of it were, what the consequences of it would be, and she was powerless. And, you know, if I think about what Aboriginal communities have experienced through the NDIS, is they've already had a distrust of government mob, and now we have bought in a scheme that's so complex for them to understand that we they have been even further pushed out to the margins to be able to not be able to make decisions or informed decisions about some of these complex systems that are being put in for their families and for themselves.
MR GRIFFIN: Can I use this as an opportunity to get your thoughts about what consultation would look like in a case like you have just described?
JOAN: Well, I think, you know, it looks like, in many ways, further consult with them in the room. Face to face, building trusting relationships. And committing to those relationships in terms of time, money, and effort around how you build those relationships with Aboriginal families.
MR GRIFFIN: And if involved in that process were people like Daisy, from your observation, what support would she need to participate in that consultation in a real fashion?
JOAN: She would either need it in language and she would need it done by the right gender and she would need it to take place in the right place with the right people from her family present to be able to assist her to make those relationships and those make those decisions on behalf of Joziah. Because within Aboriginal and Torres Strait Islander communities, care isn't just given by one you know, the parent; it's given by the whole community. And it's essential that the government bodies that are present and delegated to be able and legislated to be able to deliver these services and the funding, that they consult and that they involve the whole Aboriginal community, not just one individual.
MR GRIFFIN: At some point did Joziah leave Tennant Creek and come to Alice Springs?
JOAN: He was assisted so when the court order came down from Territory Families, it was a two-year order. And consequently, he was released from that order because he was assisted by a legal body to be able to fight against them pursuing a further order. And also to be able to talk to the NDIA about the fact that they needed to fund him from a point of SIL and from a point of being able to gain access to the services that he did that he needed.
And consequently it went to an AAT, an Administrative Appeals Tribunal, and it was settled out of court prior to the or prior to the AAT by the NDIA and the Territory Families Group saying that if the court order for his being in care wasn't extended, that the agency would be responsible for SDA or SIL. So for supported independent living. Consequently it was determined that that would is what would happen and that the court order wasn't extended and so he was released from that, and he was released into a house with his mum, with Daisy.
MR GRIFFIN: What happened then?
JOAN: They found it, again, overwhelming to be able to navigate that scheme and that system, and it was months later that I received a call from a mutual friend again, who said, "Daisy wants to talk to you about whether or not you can be available and if you will open your house up to Joziah so that he can come to Alice Springs and gain access to all of the services that he needs", which included the physio, the speech, access to a better school that had a lot more opportunity for him to be with his peers and be able to integrate in into community and be supported.
MR GRIFFIN: And Joziah has been with you in Alice Springs?
JOAN: Yes, he has. He's been here with me for two and a half years.
MR GRIFFIN: Can you tell the Commissioners what his life in Alice Springs is currently like?
JOAN: It's full. So on Mondays, he he goes to the craft council, and he works with people, various people from the community around different art projects, and he's exploring what sort of art mediums he likes. And then on Tuesday, he goes to Vinnies and works at Vinnies. And then on Wednesdays, he goes and contributes back to his community and works at the Food Bank. On Thursdays and Fridays, he goes to school and is supported to go to school there. And then on Saturday, he goes to various different community events, cultural events. He visits sometimes he's got some family here; sometimes he visits them. Other times they visit him out in the community. He goes to the cinema. He does a whole range of different activities. His life never stops.
MR GRIFFIN: I'm envious, Joan. What's Joziah's current status with the NDIS in terms of a plan?
JOAN: He's underfunded. He's completely underfunded. And they have previously regarded me, which I have been last year late last year, I made a very conscious decision that I needed to be able to become more than just his informal carer. I had to be completely step out of that role, otherwise, without me, how would he be funded to to live a life? And to live the life that he wants to lead?
MR GRIFFIN: Just going back a step, his current core budget is around $400,000?
JOAN: It's yes, that's correct.
MR GRIFFIN: And you have indicated that that's an underfunding, in your view?
JOAN: Yes, that's correct.
MR GRIFFIN: In what way?
JOAN: It doesn't pay for his overnight accommodation. It doesn't pay for somebody to be there with him to be able to ensure his safety and security around, you know, his swallowing if he drinks. It doesn't pay for somebody in the evening to be there with him, to be able to put him to bed and to be able to assist him to get to bed. It doesn't pay for anybody over school, holidays, and it doesn't pay for people beyond the weekend in terms of beyond 7.30.
MR GRIFFIN: And is that partly because he requires support between 12 and 16 hours a day, depending on the day?
JOAN: Yeah, that's correct, yeah. That's excluding sort of his sleep time. But the other thing that it doesn't provide for is it doesn't provide for him to get back home.
MR GRIFFIN: I will come to that in a moment. You by looking at your statement set out on a quest to try and create a situation to improve Joziah's position and particularly, to use my words, set him up should you no longer be available.
JOAN: Yes, that's correct
MR GRIFFIN: Can you tell the Commissioners what your thinking was and what you did to try to achieve that goal?
JOAN: So because I had knowledge of how the structure works in terms of the NDIS, the only feasible thing for me was to be able to understand that I had to manage the risk of me not being there in terms of if I passed away, and additionally, in terms of his plan, it doesn't currently provide if I need to go away for work or study leave. And so, for me, I had to step out of that informal carer mode, because he needed to be able to have safety and security in the future around his housing and around the supports that he needed.
So I set about being able to recruit different people into our lives that were already providing services, and they were set up as sole traders who provided supports to him on a daily basis and were trusted as part in terms of their qualifications and being able to deliver the services that he needed and having a relationship with him.
MR GRIFFIN: And you did that under the auspices of a company you set up?
JOAN: I did, yes.
MR GRIFFIN: You engaged a number of people to provide supports. Can I ask you how much of Joziah's and indeed his cousin, who is also with you how much of their NDIS funds goes to you personally?
JOAN: I would say no more than 10 per cent.
MR GRIFFIN: And that 10 per cent is on what basis?
JOAN: On the basis that I need to be able to provide the home for him. I need to be able to provide the additional electricity because he needs air conditioning because of his condition. In terms of his disability and the impact of his disability, he needs additional time in the in the shower for his personal care. He needs additional heating during the winter. And so, therefore, there's these accumulation of costs that have to be borne by the company, and then there are those costs in terms of the contracted people that I move into the house to be able to deliver his supports.
MR GRIFFIN: So the vast bulk of the funds gets paid to third party support providers.
JOAN: That's correct
MR GRIFFIN: Who you've arranged.
MR GRIFFIN: The model that you have set up to assist Joziah and his cousin, is that common in your experience?
JOAN: No, it's not very common at all.
MR GRIFFIN: Has it been difficult to set that arrangement up?
JOAN: It's been time consuming. It has been difficult, but not difficult for me. I'm resourced. I'm educated in the systems. I am knowledgeable, and if I don't know something, I know where to go and get the information. But in reflection of that for Aboriginal families, they couldn't do it in terms of without considerable supports to be able to build the capacity.
MR GRIFFIN: I want to take you to paragraph 67 of your statement, and, for the purpose of those listening, I will read that out. You say:
"What the NDIS doesn't seem to get, despite it being an insurance scheme, is that when you put early intervention supports and services, it often decreases people's reliance on the health system down the track. The right therapy interventions can keep Joziah limber, stretched, and improve his overall strength. Not biologically related."
I'm sorry I missed a page there
JOAN: "And improve overall strength."
MR GRIFFIN: Yes, "tone and prevent health problems." It's just that mine was double sided printing:
"... and tone and prevent health problems in future. This will likely reduce the cost to taxpayers and pressure on the health system."
Based on your experience, why have you come to that view about early intervention?
JOAN: From a medical perspective, I know it from my studies. The research tells us that the more it is that we can use our bodies, the more we will remain limber and being able to be maintain our health and wellbeing. From a practical side and personal side of things, I've seen how it is demonstrated daily by the fact that Joziah doesn't need to access health services and be accessing health services to be able to maintain his health and wellbeing. He's a remarkably strong young man.
And so, therefore, the other evidence for me is that when it is that he was in Tennant Creek, he had a number of hospital stays. He had aspiration pneumonia because of the fact of his dysphasia and him being able to and having infections in his lungs. And so, therefore, he would be in hospital for one to two weeks and then consuming those health dollars. And so therefore, you know, you don't have to be a brain surgeon to recognise that if it is that you can maintain your health and wellbeing, you are going to be less of a, you know, a cost from a perspective.
MR GRIFFIN: So from the perspective of the total cost to government, be it State or Commonwealth, your experience suggests that it might be cheaper in dollar terms to have targeted early intervention?
JOAN: Yes, definitely.
COMMISSIONER McEWIN: I have a question. Joan, if we could go back in time and if the NDIS was established when Joziah was born, what would early intervention have looked like then?
JOAN: It would have still looked like very similar to what it is now, and that is access to physiotherapy, access to speech. There could have been it's really it's a really interesting question because so much of his physical strength could have been attuned to just being this fine tuned body that was focused on his physical strength and the strengths around what he could do. And so, therefore, I believe because it's classic that when Joziah was prior to him going into the care of Territory Families, he could get up out of his off of the floor into his own wheelchair.
Consequently, when it is that he wasn't able to access the physiotherapy, he was then solely reliant upon another carer or two carers to be able to sling him with a hoist into and out of his chair. During the time that he has been with me he still relies upon a hoist; however, it's much less. And he's been able to build up his upper body strength so that he can pull himself into the bed.
COMMISSIONER McEWIN: Thank you.
MR GRIFFIN: I neglected at the start of the evidence to indicate that Joan's legal representative, Matoula Makris, in the hearing room and I didn't give her an opportunity to announce her appearance, and I do so now.
CHAIR: Thank you very much.
MR GRIFFIN: Joan, if I can take you something back to you alluded to earlier, your view is return to country is very important to people such as Joziah. And your statement indicates at paragraph 68 that in the last two and a half years, he's only returned to Tennant Creek on three occasions. Now, my understanding is Tennant Creek is about 500km from Alice Springs?
JOAN: Yes, it is.
MR GRIFFIN: That seems an extraordinary few number of times to go back home.
MR GRIFFIN: When it's up the highway?
JOAN: Clearly through these last few years we've had a pandemic, so it has been extraordinary because the communities have been further isolated through the biosecurity. But in terms of that, his plan also hasn't permitted for there to be those extra dollars spent on being able to take him back home.
MR GRIFFIN: So if you took the view that it was important for Joziah to return to Tennant Creek for a visit, what would you need to do?
JOAN: The agency would need to fund him correctly to be able to support two workers going back with him, and additionally transport as well. And that comes at a huge cost to his plan. And so there always has to be this measure of doing the things that we have to do first around his health and his wellbeing, around his physiotherapy to be able to maintain those types of things. And that there has to be some consideration made to how it is that we balance those costs.
MR GRIFFIN: So, is it the case that the plan would allow you to make that decision, but the cost consequences would impinge on other supports?
JOAN: That's correct. It's like robbing Peter to pay Paul, effectively.
MR GRIFFIN: Is the plan core funding of $400,000 reasonably flexible in terms of what it's allocated to?
JOAN: It is.
MR GRIFFIN: And who ultimately makes the decision as to allocation of those funds?
JOAN: In this particular instance now, it goes back to Daisy as well as the advocate that's acting on behalf of Daisy.
MR GRIFFIN: Based on your experience, in an ideal world, how many times should Joziah be able to return to Tennant Creek for cultural and family reasons?
JOAN: Look, I would probably say six to seven times a year. But that's not exclusive of the fact of Daisy being able to come down here as well.
MR GRIFFIN: Yes. And as we know, there's difficulties for Daisy in travelling.
MR GRIFFIN: If Joziah was to return permanently to Tennant Creek, what would need to be in place?
JOAN: There would need to be services in place to be able to maintain his physical health and wellbeing around the impact of his disability associated with physiotherapy. He would need housing that was accessible fully accessible because he lives in a wheelchair in terms of that. There would need to be his equipment there and there would need to be other there would need to be supports. And if it is that we are looking at the amount of people that are involved in Joziah's care now, you would still need to be able to have those types of services available in Tennant Creek, and they're just sadly not.
MR GRIFFIN: Have you made arrangements in relation to constructing a building in Alice Springs?
JOAN: Yes, I have.
MR GRIFFIN: Can you explain to the Commissioners what you've done?
JOAN: So I've taken what was a garage and then gone to an architect to be able to redesign how that structure is and then be able to extend that structure by 6m and then go up so that it can have an accessible bathroom. It now has two living areas and a bedroom and a kitchen for Joziah to be able to have independence, basically.
MR GRIFFIN: Is there any capacity for Joziah to have any family members stay with him?
JOAN: Yes, there so the two living areas can be extended so that his family can have privacy. So that obviously because of cultural reasons, Daisy and Joziah would need a level of separation, and so, consequently, there is that area there for her to use.
MR GRIFFIN: You say in your statement at paragraph 89, I quote, that you:
"... strongly believe that having a person-centred scheme which provides for an individual to have choice over who provides their care is important, unlike the previous block funding scheme before the NDIS. However, the manner in which the current system is being implemented needs significant improvement."
I would like to give you the opportunity to indicate the areas of improvement, based on your experience, that you would recommend for consideration by the Commissioners?
JOAN: There needs to be full consideration around how to get people to country and get them back to country supported and being able to build the services. The other aspect is that the majority of care is provided unpaid by family members currently. I believe there needs to be extreme diligence around transparency and integrity and safety and security for people, but the families who are out there on the remote communities need to be afforded the liberty and the freedom to be able to provide the services themselves to the family members.
Because they are already doing the majority of that work, and yet they are doing it unpaid. And for that reason, it's leading to a greater level of disadvantage and poverty amongst Aboriginal communities because they are unable to work, because they are caring for family. And consequently, if it is that the scheme was restructured to allow families to be able to deliver that care, I believe there would be significant better dollars spent by the agency, and the community would be benefitting as well because there would be more of that money that is currently going to external providers within the community itself.
MR GRIFFIN: You indicate in your statement by way of suggestions that one thing that is required is more cooperation between service providers rather than the idea of increasing competition. You say that in paragraph 89.
MR GRIFFIN: What do you mean by that?
JOAN: I mean that within there needs to be greater communications and case management amongst the providers themselves, and that needs to come from a coordinator of supports or a because, currently, coordination of supports doesn't allow for any provision of case management, and it's so vital to Aboriginal families and Torres Strait Islander families. Because their lives are complex and they have touch points across all different areas: Housing, Justice, they may have employment obligations, Health.
All of those things that we know are so important for families just generally speaking and it doesn't need to be just Aboriginal families. It's families in general. There needs to be the provision and ability for people to access the services that they need, and they need to be able to get it from a trusted point.
MR GRIFFIN: And when you use the term "case management", correct me if I am wrong, but are you saying that players in the system at the moment might make well intentioned decisions in their particular area but no one is taking an overview, in some cases, to believe able to work out holistically how it could be better undertaken?
JOAN: Yeah. And one of the things that I've observed is it's because people are the agencies, the government bodies are always arguing over whose funds they are spending over what delegation. And consequently they need to be looking at the person in the centre, and that is the person with the lived experience of disability. And they need to come back to providing safety and security for that person. And in order to do that, you've got to be able to look at that person as the as the very centre of what is going on and how services are being delivered.
And you need to be able to work collaboratively together to be able to provide the right level of service for the individual and it can't be exclusive of them. And it can't be as if it is that they are a number on an actuary's spreadsheet, because they're not.
MR GRIFFIN: If one worked on a model that had a designated case manager in the way you describe, who would be the appropriate person to take on that role?
JOAN: Well, I think believe if it is that we are coming from a point of the impact of disability, that it should start with the impact of disability and be able to go out from there and be able to be all-encompassing. And there might sometimes be different focus areas that for instance, housing or education, but at the very core, you've got somebody driving it. Having said that, the coordination of supports role needs to be better supported to be able to understand how it is that they can work with people with disability and their families to be able to achieve the goals of their plan.
MR GRIFFIN: I want to explore further your philosophical approach to a situation like Joziah's. Your central approach, as I understand it, the central principle has to be the safety and security around the individual. Is that correct?
JOAN: Yes, that is correct. It and it needs to be in consult with the person. Joziah is the centre of those decisions for us.
MR GRIFFIN: And yet the wider view is that the next stage is that has to be in the context of community in the case of someone like Joziah?
JOAN: Yeah, it extends out to his family who have a say, who have discussions with us, who call us, and say, "We want him to catch up with family. This is where he's going to be going." They're calling the shots in terms of that. They're directing it.
MR GRIFFIN: And you use, on occasions, the term "risk management." What do you mean by that term?
JOAN: For me, it's around how does all that I've set up continue without me? So that it can continue. So that it can be sustainable and so that it can provide the right level of care when care and support when it is needed by Joziah. Because at any one stage, he may need it has to have a level of flexibility around it. Because he's an individual who who warrants us to pay attention to what he wants in his life. And it needs to be flexible so that we can pick up and go to the movies or go to an event that he wants to go to. And the other aspect for me is he needs to be driving his team around him, around responding to his immediate needs.
The element for me is, he just doesn't fit into a box that NDIA want to put him in, and that is a group home. They don't want to fund his choice and control, yet the scheme is has been set up to do that. And yet were wanting to put him into a group home where he won't have that level of flexibility around being able to go to the football when he wants. He won't be able to go to the movies whenever he wants. Yet he has that desire and we're trying to say, "No, you can't have that."
MR GRIFFIN: Joan, you are a very well-educated woman who has worked in senior management roles. What, in your view, is the level of complexity of the NDIS?
JOAN: You need a degree in NDIS to it be able to navigate it.
MR GRIFFIN: Let's start with you before we talk about others. What do you find challenging about trying to navigate your way through the NDIS?
JOAN: The complete absence of the agency to understand the context of Aboriginal people in remote and very remote places. The people that I've spoken to from the agency that have previously either been wanting to get information from me, have been calling me from Sydney and Canberra. And they don't understand the context of how it is that people live in remote and very remote Australia. Even from a cultural context, they don't even understand it. Even from the context that even if we go back to when is that the agency were saying that the parent, Daisy, should have been responsible. It was with a complete without complete regard for how it is that his care and his personal care should be delivered from a community point of view.
The expectation placed on Aboriginal people are that they are going to conform to this system and this scheme that is just completely not where they are at in terms of culture.
MR GRIFFIN: There is one very practical suggestion you make is that senior people in the NDIA should adopt a boots on the ground in remote communities from time to time?
JOAN: They do. And they should. But they don't come here for long enough, and they don't establish relationships. And we are always being put forward to another delegate who is having to make the decision completely out of the context.
MR GRIFFIN: There is also, in your statement, the question of cultural competency.
JOAN: Yes, definitely. So in terms of that, again, I've just reflected on the fact of people not understanding that his personal care shouldn't be taken care of by Daisy.
MR GRIFFIN: Do you have any experience of the level of what I will call cultural competency amongst NDIA employees that you've come across?
JOAN: I've I've met some planners who are extraordinarily good at it. But they are all people that have been here and been living in amongst the environment. The others just don't have it.
MR GRIFFIN: How could one build the capacity amongst local people to take on those roles?
JOAN: That's a good question. I think it's about being able to bring them alongside the people with disability that they already care for and support within communities and being able to understand how it translates to this bureaucratic layers and being able to explain that in language, through concepts, through construct in terms of pictures so that people can really understand what's happening for them. And to have them design it as well. They need to be able to consult with the communities themselves around what are the priorities for the community and how will it how can things change for them?
Because Aboriginal people have demonstrated to us for thousands upon thousands of years about how resilient they are and how ingenious they are around being able to bring their environments to meet their needs. And so therefore they need to be able to be given that opportunity to be involved in the conversation and drive their own priorities and have empowerment.
MR GRIFFIN: Of the NDIA staff you've come across, to your knowledge, have any of them been people with significant disabilities themselves?
MR GRIFFIN: Have you ever had that discussion with them, that it seems, to an outsider, unusual that an organisation designed to support people with disability perhaps doesn't have much representation for people with disability in its management?
JOAN: Yes, because I've had to explain to them things that things that have been written in Joziah's OT report that they just don't understand around disability. So in terms of that they are already demonstrating deficits around their ability to understand the people that they are making decisions about. And they only ever focus on a primary disability. They don't focus on the whole the whole person and the impact of disabilities, especially when it is that you have multiple and complex in your in your statement around who you are.
MR GRIFFIN: Joan, I want to conclude by taking you to paragraphs 98 and 99 of your statement. And for those listening, 98 says:
"The NDIS is a person-centred model. It has been thrust into the lives of traditional owners who work on a more social model of disability. The NDIS is structured around the idea that society should be 'less for' and 'more with' people with disability. In Aboriginal communities, it is the community that provides supports."
And you go on in 99:
"Many First Nations communities want to approach things from a more of a community perspective. I know that mightn't mean that some individuals lose some choice and control, but they should talk to people about that and see what they would prefer."
Would you care to elaborate upon what you have expressed in those paragraphs?
JOAN: My statement there is saying that, at the moment, there is an absence of services within community. My statement is also saying that if it is that we bring in more services and/or build the community's capacity to deliver those services themselves, that we can have people within the community receive the services in the timely manner.
MR GRIFFIN: Thank you. Chair, I note the time and I wanted to give Commissioners the opportunity to ask any questions
CHAIR: Yes. Thank you, Mr Griffin. I will first ask Commissioner Mason whether you have any questions for Joan?
COMMISSIONER MASON: Yes, there seems to be a consistent theme in your statement, Joan, around the central importance of family and community. And that's whether a First Nations person has a disability, whether they don't, whether they are a man or a woman, a child, that the consistency of family and community are there for all of those intersectionalities, if I can put it that way. We have also heard First Peoples Disability Network talk about the strength of culture and understanding those intersectionalities as a strength of Aboriginal and Torres Strait Islander culture: People are accepted as they are, with all their diversities, not focusing on in particular.
So, in your experience and this is around looking at the your experiences of services in remote communities, that idea of case management, that's also something that the Commission has heard about from time to time. And not necessarily coordination of supports, understanding about this idea of case management, because that has to be local for it to be effective. Who, in your mind, your experience, should be leading case management on the ground in communities for First Nations people with disability through this model of the NDIS?
JOAN: I think it should be driven by the community itself and the community leaders who have that authority within those family groups. And it should be driven by the families.
COMMISSIONER MASON: When you talk about community leader, can you be more specific?
JOAN: Community leaders in terms of family members who have those authorities over the person, young people and/or other people. And being able to have a those that have the ability to support people who have the needs around their disability. Those most directly related to them to be able to be that that connection to the person. And the person themselves. It doesn't exclude the person who has the disability. That there needs to be careful construct around how that is implemented for Aboriginal communities, and it has to be able to involve them.
COMMISSIONER MASON: Because often case management is coordinated and led by an organisation, not by family talking about service delivery. So if we are talking about services in our local community, ideally, what would be the better approach, in your view?
JOAN: Have the Aboriginal communities, the elders within the community that have those decision-making responsibilities, have them at the very core of driving it.
COMMISSIONER MASON: And what would that be in Tennant Creek or in Alice Springs?
JOAN: In terms of who?
COMMISSIONER MASON: Coordination of case management.
JOAN: It could be it almost seems as if, as a white woman, I shouldn't be making those decisions in terms or even articulating it. But it really needs to come from talking deeply and listening deeply to the Aboriginal communities around who those people are.
COMMISSIONER MASON: Thank you.
JOAN: Thank you.
CHAIR: Commissioner McEwin?
COMMISSIONER McEWIN: Yes. Thank you. Joan, you mentioned at some point in your evidence mainstream mainstream systems, justice, transport, education, health. If we take health as an example, and perhaps just briefly describe what you think are the main things that need to improve for the interface between, say, health and the NDIS. Do you have any observations about that?
JOAN: There needs to be a greater level of flexibility around the use of the funding to be able to address the issues and to be able to explore that. So, for Aboriginal and Torres Strait Islander communities, there's a lack of diagnosis and there are always people are always having to jump through these hoops around being able to come from this deficit model of diagnosis rather than actually looking at what the person can do and wants to do and being able to come from a strengths-based approach.
Now, the health itself, there should be a level of acknowledgment that it's often difficult to get diagnosis. There is often a lack of information or there's a lack of trust by Aboriginal people to be able to disclose, for the fear that they are going to be taken by, in this case, Territory Families. And so, therefore, we need to be able to move beyond that and work collectively together to be able to deliver the services that people need. Not make judgments around the fact that there they are unable to have that diagnosis just because of where they are at.
COMMISSIONER McEWIN: So in terms of the broader health system, do you think there also needs to be improvement when they interact with a disabled person?
JOAN: Definitely, definitely. So in terms of that, there needs to be better facilities that are built to be able to accommodate for people's needs. If it is that we look at Alice Springs Hospital, for instance, I've had instances where it is that there has been another child that I've looked after who couldn't shower and have personal care because the hoist that they did have couldn't fit in the room that they had and into the shower. And so, therefore, it leaves people feeling without dignity and respect around their care.
COMMISSIONER McEWIN: My final question is, you mentioned that you have met some good NDIS planners. What was good about them?
JOAN: The good things that were were were that they listened and that they followed up. Often too often, you are waiting for months without any response from people. The other aspect is that they have been able to talk about how it is that you can use funding to be able to get the things that you need without, I suppose, moving outside of what the rules are in terms of that, and being able to understand that a call from them to advise you around how it is that you can access different equipment and/or other, in a timely manner.
Because sometimes when it is that you do want a piece of equipment and there was a classic example where it is that I had a piece of shower equipment that we needed to get. But it wasn't available north or south from Darwin or from Adelaide; it was available in Queensland and it had to go via Sydney. Then over to Adelaide, and then up through here. It took us three months to get that piece of equipment. And it was just a hire piece of equipment to trial it. So being able to access those types of pieces of equipment is so essential to people.
COMMISSIONER McEWIN: Thank you.
JOAN: Thank you.
CHAIR: Joan, when I read your statement looking at the position around June 2019, which is dealt with at paragraph 30 of your statement, at that point, Joziah is in an assessable house in Tennant Creek provided by Territory Housing. He has funding in his NDIS plan for support workers for a certain period of time over each week, and then there's you describe that as a reasonably robust plan, and then it goes which was negotiated as the result of the appeal to the AAT. At that point, would was it your view that Joziah was adequately provided for in Tennant Creek through the NDIS?
JOAN: Yes. But no in that there was no services for him to receive from such as a physio on a regular basis.
CHAIR: Right. So that the defect of the position in Tennant Creek where the funding from the NDIS and accommodation provided by Territory Housing, the defect was the absence of services, particularly ancillary health services, that Joziah needed. Is that a fair way of putting it?
JOAN: Yes. And in addition to that, there was no modification to his curriculum at school. There was no necessary supports that he could receive through school in terms of support supported supports, such as a teacher's assistance that could assist him in the classroom. So those types of supports weren't available to him.
CHAIR: Because the services weren't available in Tennant Creek?
JOAN: That's correct.
CHAIR: From your statement it appears that Joziah had a difficulty because his weight plummeted. And we don't need to go into why that might have happened. But that was obviously a health problem. When we come to Alice Springs, you have described Joziah's current position in terms that suggest that he has a very full life that he enjoys.
CHAIR: Is the NDIS working, then, for him in Alice Springs?
JOAN: No, because it's reliant upon me as being that informal support at this moment in time. I bear the cost of that in terms of not being able to go off on work trips because of the fact that I need to be able either use his funding flexibly to get people into look after him in the evening.
CHAIR: Are you familiar with his current plan?
JOAN: I am familiar with his current plan.
CHAIR: It actually provides for funded supports between 24 May 2022 and 24 May 2023, a total of $500,000, of which $407,000 is said to be core supports funding. And the plan states:
And that is Joziah:
"... can use my core support funding flexibly to help with daily activities my current disability related needs and to work towards achieving my goals. This may include supports for carers' respite."
That sounds as though the arrangements provided by the NDIA, at least for that element of $407,000, are reasonably flexible. Is that a correct understanding or incorrect?
JOAN: It's correct to be in terms of its flexibility, but it isn't correct in terms of what it provides for him in a year, because under the current costings in terms of service delivery, it doesn't add up in terms of the figures, in terms of providing for him up until midnight when he wants to go to bed or 10 o'clock when he wants to go to bed, for there to be supports for him.
CHAIR: So that your criticism is essentially that the $407,000 isn't enough to provide for all of the supports that Joziah should receive?
JOAN: That's correct.
CHAIR: Does that mean I don't mean to diminish this or to cast any doubt upon your analysis, but does that mean it's just a question of money?
JOAN: It is, but it's also
CHAIR: More money would solve the problem. Is that what you're saying?
JOAN: It would solve the problem because it would provide for what he's been assessed by his OT as needing, which is 24/7 supports. With a with an overnight stay that's
CHAIR: Does that reflect a disagreement between the assessment by the OT and the NDIA's assessment? That the NDIA is taking a different view?
JOAN: It does. It does.
CHAIR: Yes, okay. One other element that actually I don't think on my reading is included in the $500,000 is home modifications, for which a quote is required. But that is up to $35,800. And this says:
"I am eligible for SDA as follows. The design category is fully accessible, building type is house, three residents, located in Northern Territory, outback."
Can you help with what that's intended to do or what it means?
JOAN: Well, it means that there if there was SDA here, of which there is very there is no stock, that he could move into an SDA premise.
CHAIR: Right. But that's got nothing to do with the accommodation that you provide?
CHAIR: I see. I understand. I wasn't quite sure what it meant. All right. Well, thank you very much. Now, I will just inquire, does your do you have any questions that you wish to ask of Joan? That's you. Ms sorry?
MS MAKRIS: No.
CHAIR: You don't. Okay. All right. Thank you very much. In that case, Joan, thank you very much for giving us the benefit of your very thoughtful evidence and for the statement that you have provided. We are very grateful to you for the detail and work that's gone into your statement your evidence. So thank you very much.
JOAN: Thank you very much. Thank you.
<THE WITNESS WITHDREW
CHAIR: Mr Griffin, what should we do now?
MR GRIFFIN: We require a short adjournment just to reconfigure for next witness.
CHAIR: 10 minutes?
MR GRIFFIN: 10 minutes would be
CHAIR: It's now nearly 10 past 3; we will resume at 3.20.
<ADJOURNED 3:09 PM
<RESUMED 3:22 PM
CHAIR: Yes, Mr Griffin.
MR GRIFFIN: Chair, I call Ms Jody Barney to give evidence. Ms Barney is seated in front of you. Ms Barney has provided a statement to this public hearing dated 11 June 2022 STAT.0551.0001.0001. This statement is in Hearing Bundle A at tab 12. The annexure to this statement is in Hearing Bundle A, tab 13. My understanding is Ms Barney will make an oath.
CHAIR: Ms Barney, thank you very much for coming to the Royal Commission to give evidence today. We are very appreciative of your making the statement that you have and being prepared to give oral evidence in Alice Springs today. If you would be good enough to follow the instructions of my associate, whom you can probably see in the distance, she will administer the oath to you. Thank you.
<JODY BARNEY, SWORN>
CHAIR: Thank you very much, Ms Barney. I will now ask Mr Griffin to ask you some questions.
<EXAMINATION BY MR GRIFFIN SC
MR GRIFFIN: Ms Barney, we had a conference yesterday in which I came to the view you had much more to say than we have time available for you to say it. So if I ask you a question which you don't think is a very good question, there's a better question to answer, please take that liberty.
JODY BARNEY: I certainly will.
CHAIR: This is training to be a politician.
MR GRIFFIN: You've set out in your statement at paragraph 5 your academic background?
JODY BARNEY: Yes, that's correct.
MR GRIFFIN: And I understand you are contemplating doing a PhD?
JODY BARNEY: Well, hopefully.
MR GRIFFIN: You're based in
JODY BARNEY: That's if I have the opportunity. I do, in fact, have an interview scheduled for next week.
MR GRIFFIN: And what area do you wish to do that?
JODY BARNEY: I want to talk about preservation of First Nations sign languages and the importance of going through the legal system, the justice system.
MR GRIFFIN: You conduct a business which has quite exceptional characteristics. Can you explain to the Commissioners what you do and for whom you do it?
JODY BARNEY: Certainly. Well, I will try to make this brief as possible. My business is called Deaf Indigenous Community Consultation. I established the business in 2007. I cover the needs of First Nations Deaf and hard of hearing people who have complex communication needs. My work entails travel around Australia and overseas as well, currently, with other groups of First Nations people who have complications with their communication needs, in the justice system, or with organisations or service providers with whom they work.
I really try to improve the community. I provide advice about advocacy and help them to access whatever it is they need within the systems the service systems, whether it be in legal systems or mainstream services. I try to form a bridge to help people to communicate with each other. I cover a lot of knowledge around important cultural preservation, using appropriate sign language and ensuring that the community themselves can have access to the information that they need. And certainly for future generations, that they have access to the communication and the information they need as well.
MR GRIFFIN: Ms Barney, can you explain to the wider audience following this public hearing what is the process in communicating from a First Nations person speaking in language through to English?
JODY BARNEY: Well, that's a big question. Often for myself, in my experience in the work that I do, I was born and raised on country but I'm also part of the Stolen Generation. I learned English from a very young age as well. But I didn't really learn sign language in a mainstream system. I learnt it on country with a variety of different people, members of the community where the language environment was restricted, where communication within the community was quite difficult, and cultural sign languages there were very strongly affiliated with the local area.
So it's culturally bound information, it's culturally bound to place and community. And I learnt that through my childhood. As I was growing up, I had many experiences with a variety of people in the community, and I naturally absorbed the language in that way, through immersion. It's a very visual language, of course. So what was hard for me is, in a mainstream service environment and the education system, it really didn't fit my needs at the time.
So my cultural needs as a Deaf person and as an Aboriginal Deaf person really didn't fit with those organisations and those systems. I was working in a situation and attending a situation that had no understanding of my linguistic needs, and I just couldn't cope with that. I had to work very hard in order to study in that kind of environment. So as a Deaf person, in Deaf education this was in the 1980s, of course, when I was at school and I don't want to disclose my age, but there you go, you can probably work it out.
So it was very important for me to know that I had a cultural sign language as my foundation, that I could use as my base. And when I talked with members of the Deaf community, I had another foundation of cultural signs that I could hang on which was really it was really an empowering experience for me. I then had English that I could add on top, and I had signed English and then Auslan. So all of the cultural sign language that I had learned throughout my childhood was a very strong foundation for me.
They were very strong pillars in my life, which meant that I could use those things alongside each other, and I didn't feel disconnected from my cultural identity. I could learn language throughout childhood, and I needed to have access, as a first step for me, to get that cultural foundation, to know what was important for me to know about my community and about my family. Because when I tried to have hearing aid, which were body worn hearing aids very old-fashioned ones at the time I found them a little overwhelming.
The battery I had to wear on my chest was very weighty, and it wasn't very comfortable at all to try to move around. And it felt I felt as though it labelled me, and I found that quite awkward to deal with. I had never been labelled before in my life, so that was extremely difficult for me. But when I work with my community and communities around Australia, I know that experience. I know that from my own first hand experience.
I can identify with people who have a hearing loss, children who don't have access to communication. Maybe at home they have hand talk, and their own sign languages, of course. There are very rich home signing systems that people use, but what I'm talking about is particular to the Deaf community who live in communities, who have other really rich cultural sign languages that are very detailed and complex. They are very visual. And they're well respected in community. And there are lots of cultural protocols about how one works in community with people who live there.
MR GRIFFIN: You're personally aware of at least 55 First Nations sign languages?
JODY BARNEY: Yes, that's right.
MR GRIFFIN: And you have the ability to communicate in at least 18 of those?
JODY BARNEY: Well, recently I was assessed and I was testing myself and I can say I can use 20 now. There are 20 now. And through the period of COVID when we had lots of those lockdowns that were quite lengthy, I had people contacting me online, and so I was able to learn two more sign languages. I knew a little about them, but I was able to enhance my skills so I could help communication with members of those communities and give them information about COVID and about the pandemic. So it's 20 now.
MR GRIFFIN: And in paragraph 16 and 17 of your statement, you elaborate upon the use of sign languages in those communities. They are quite complex, aren't they?
JODY BARNEY: Yes. Yes, they are.
MR GRIFFIN: Can I take you
JODY BARNEY: Well sorry, what was that? Okay, I will just continue my answer. Australian sign language users = that's Auslan, people who use Auslan whether they be Deaf or hard of hearing people maybe will be using sign language as their preferred language and choose not to speak. But we know that there are different dialects that are used in the community all around Australia. We know that to be the case. But if I were to go maybe to learn to sign with people, and we would be able to communicate quite well using Auslan, but with Aboriginal sign language systems, that's not the case.
It's quite rare that you can go to different communities. You might use some gestures that are similar between different countries, but cultural sign languages have really important cultural links to that area, to that country. And so you can't then move one Aboriginal sign language to another place. It's not possible to do that. You can't transfer one to the other; you have to have respect for the sign language used in that specific area. They don't overlap. And that makes it extremely difficult and complicated.
If you have a community where you have Deaf or hard of hearing people who move around a lot for no reason or maybe they have to move for health reasons or they are part of the Stolen Generation or they move for education, that's extremely difficult. And often my work is to try to find out where that individual might come from, what sign language they are using, how they develop that language and how they manage how I can code switch, if you like, to be able to communicate with them.
I might work with Deaf people who could use up to seven or eight different signing systems, and then someone who might be a person who can hear and use spoken language could use five or six or seven different spoken languages. So it's quite similar between people who can hear and people who are Deaf in being able to use multiple sign languages.
MR GRIFFIN: Jody, can I ask you a little bit about your Deaf Indigenous Community Consultancy. You were
JODY BARNEY: Yes.
MR GRIFFIN: You are a sole trader?
JODY BARNEY: I'm a company currently. Yes, established as a company.
MR GRIFFIN: And how many clients do you currently have in
JODY BARNEY: At the moment, I work with 74 people.
MR GRIFFIN: Are those clients spread throughout Australia?
JODY BARNEY: Yes, they are. But here in the Northern Territory, I work with approximately 50 clients.
MR GRIFFIN: And what are the typical services you provide to those clients?
JODY BARNEY: Well, it varies a great deal. Most of the work that I do is to provide support around language access in the court system, with the NDIS, hospital and health environments and so forth. Rarely do I work in education, but I also can work with clients who have performances, and I help with translations between languages, and I also help with supporting families who want to make decisions about cultural information and finding out if their family members have specific needs within their community and what their preferences are, particularly if they are constantly moving from place to place. And often I work a lot with people who aren't on country who aren't currently on country.
COMMISSIONER McEWIN: Excuse me, Counsel, if I may interject. I have a question for you, Jody. You said you have around 70 clients. I'm just wondering how you find those clients. Are they referred by other organisations? Can you give us some more information about how you actually come into contact with those clients?
JODY BARNEY: Yes, of course, yes. With the 74 clients I currently work with, approximately 25 per cent of them are clients that I have worked with over a series of years. For the newer clients I have, I've been referred or they have been referred to me through different systems, whether it be the NDIS provider, or a psychologist, a lawyer. It varies a great deal. And a lot of my business is word of mouth, actually. Families will get in touch with me. They will say, "I've got a client or I've got a grandfather or a you know, a nephew" or someone like that and so a lot of my work comes through word of mouth. You know, there's a really good grapevine within my community.
COMMISSIONER McEWIN: And just to add one more question, are you looking at different options in terms of how to improve access? And how do you do that?
JODY BARNEY: Yes, definitely. Part of my work is really to see what's available for the clients with whom I work. What's available in their communities. And if it's not in their community where they're living currently if they have been removed or they are not able to return home for whatever reason that might be I find out what's available in the place they are currently living, if there are other Deaf First Nations people who might be able to provide them with support where they currently are, or if they are working with interpreters. A whole range of services are the kinds of things that I do. My work is really my intention is to do myself out of a job.
COMMISSIONER McEWIN: Thank you, Jody.
MR GRIFFIN: Do you have a view as to whether the NDIS as currently structured is appropriate for Deaf and hard of hearing First Nations people?
JODY BARNEY: No. And the reason I say that is the system is western in cultural view. I'm trying to think of where I am and orient the sign for "west" the right way. It's a western system. It's a mainstream system. It doesn't give thought to about the layers of culture that people have. Not only for Aboriginal and Torres Strait Islander people, but also for Deaf people. So those cultural barriers that people encounter, you can see that there's really a double disadvantage.
We can see failures where people don't get information in a timely manner. It might not be accessible in the right language for that person. And, unfortunately, the NDIS system as it currently stands keeps changing its mind and changing strategy. Legislation changes, line items change constantly. So needs might change from one plan review to the next, and what that means is that people or clients who aren't able to live on country for whatever reason are then removed to another location, and then they are not supported.
They are not provided with access to their culture, their language, their cultural sign language. They are not provided with the support they need. And often a support coordinator or a behaviour specialist or, if they are located in a SIL housing, the manager of that housing environment or whoever it might be, I've often found it really difficult to provide support for them because they will say, "Well, we don't have funding for that. We don't have a contract for that. We can't pay these people. It's too expensive" and so on. The list of reasons just goes on and on.
Or the response might be, "This client is okay. Don't worry about them. They don't need that. We are just providing housing for them. That's all we need to worry about." Or, "We make sure we transport them to medical appointments. We make sure they get involved in community", but often, from what I see, the system isn't providing access to quality training and quality services for these people.
COMMISSIONER MASON: Mr Griffin, can I ask a question. Does the NDIS recognise First Nations Australian language sign languages?
JODY BARNEY: Unfortunately, no. The system in the way it's set up at the moment and the way it operates is that any booking for an interpreter is for Auslan only. If you are a Deaf person, you can access an interpreter if you need an interpreter. If you are a Deaf person who needs an Auslan interpreter, you can have that interpreter provided. If you need an Indigenous interpreter, that is challenging to try to secure an interpreter, and often it won't be funded.
In my work, I'm trying to support staff and service providers and organisations to understand what their skill development needs are and what they need to improve upon. They certainly do need to learn Auslan, and having Auslan skills is worthwhile, certainly, to interact with the mainstream system, but, really, they should be learning cultural sign languages as well for a lot of people. It's the same in the Deaf community. It doesn't matter where you come from in the Deaf community. Everyone will have their preferred sign language system that they wish to use. And that should be respected. And, unfortunately, that's not the case.
COMMISSIONER MASON: And can I ask you, prior to the NDIS, were the disability services and the different jurisdictions, states and territories, did they recognise or did any of them recognise First Nations Australian sign languages?
JODY BARNEY: No.
COMMISSIONER MASON: Okay.
JODY BARNEY: Because we know the NDIS system itself, as it currently is, often will say to any spoken language user who is not Deaf, "Well, you have to fund this yourself if you want to have a spoken language interpreter." If you are Deaf, they will provide access because they're working from a disability model. The disability model of access for Deaf people is that they can have an interpreter, and that's provided with no problem, but really there is no understanding of cultural needs of people who need to have the sign language system that they use. Their cultural sign language. There's no understanding of that.
And it doesn't matter where you come from, you should have access to the language you prefer. You should have access to language, you should have access, and you need to be able to understand your plan. You need to have a plan that meets your needs and suits your needs. And if you can't get that in your first language, then what does that mean for people? Really, it's it's not a good system. And it should change. I'm not sure if I answered the question, actually.
MR GRIFFIN: Jody
COMMISSIONER McEWIN: Mr Griffin, I might just interrupt with an additional question, just to follow up from Commissioner Mason's question. So you are saying that the Deaf community in Australia have similar challenges when it comes to communication access. Does that apply to the wider community of Deaf people in Australia? What specifically is it about Deaf First Nations people that is unique? Is it cultural appropriateness? Would you like to add any more information about the specifics and what's unique of a Deaf First Nations person in terms of communication?
JODY BARNEY: So the Deaf community is quite similar. I can see a lot of similarities. The difference for First Nations Deaf communities is that we don't have a pool of interpreters available who are experienced and knowledgeable and well trained and qualified to be able to work in the same kinds of areas that Auslan interpreters do. We have wonderful Auslan interpreters working here at the hearing, but there are no Deaf Aboriginal interpreters working.
There are no First Nations interpreters working. We don't yet have that in place and so we need more of an investment to be able to increase that pool, to be able to improve access for people.
COMMISSIONER McEWIN: Thank you.
MR GRIFFIN: Jody, you referred to in your statement about how Deaf or heard of people on country often have to come into the urban areas for treatment health treatment. And you refer to a particular example you had concerning an older Aboriginal gentleman you encountered in a hospital. I wonder whether you might explain to the Commissioners briefly what happened in that encounter.
JODY BARNEY: Yes. Certainly. I'm happy to do that. I have permission from the person involved to be able to share their story. I had attended a hospital appointment for another Deaf individual, an Aboriginal woman who was in the hospital, and I had an Auslan interpreter working with me. So the two of us attended the hospital for the Deaf woman. The interpreter who was with me could hear something, that someone was upset in a neighbouring room or in a neighbouring bed, could hear someone screaming and calling out, and said to me, "I think there's another Deaf person there who is not well or upset or something."
And the interpreter said to me, "I think it's a male voice that I can hear." So I went into the emergency area, into the cubicle, which was separated by a curtain. So I saw my client first, the Deaf Aboriginal woman that I was there to work with, and we established communication with each other. And I looked at the neighbouring cubicle and saw that there was a Deaf person there who looked at me, and he looked to be quite upset. He looked unwell. He had lots of electrodes and things taped to his chest.
And I didn't know this person. However, he had a support worker with him who approached me and said, "I wonder if you will be able to help him." And I said "Well, no, my primary responsibility is for this woman that I'm here to work with." And the woman gave me permission. She said, "Look, go ahead and help him, if you want to." And so I did. I understood his sign language, and so the interpreter and I had worked with him before.
He had received an anaesthetic previously and he wasn't responding. And so I was trying to explain, and I actually discovered that he was having a heart attack. He was in the process of having a heart attack. He didn't know what was going on. And so I needed to explain about the function of his heart, and that there was a problem with his heart and so forth. And then he calmed down after he got the explanation. Which was terrific.
And he's alive today thank goodness. But because of that experience, you know, it was the first time I had met this man. The woman that I was there to work with was fine about me communicating with him, and I asked her if she knew him, and they didn't know each other, I discovered. But they shared a common sign language. And I thought, okay, well that's good. We were able to get communication established. But, unfortunately, the man is unable to live on country for medical reasons.
So he's been displaced into an urban centre. He doesn't want to learn Auslan. He doesn't want English. He wants his cultural sign language. He's a proud Aboriginal man. He wants to practice his culture. So I found a young Deaf Aboriginal man who has Auslan skills and I asked him if he might be able to get in touch with this older Deaf man for mentoring purposes, and perhaps they can work with each other and the older gentleman would be able to teach the younger man about culture. Because the younger man has been removed from country for educational purposes.
So currently we are trying to put that in place. It's not a perfect solution, I know, for a young man and an older gentleman to be interacting in that kind of way, but when they are on country, they could go out fishing and they could chat with each other and when I visit, it's just lovely to see the two of them interacting. But I think to myself, if I hadn't been there on that day that man potentially would have died. I actually think definitely he would have died. The doctor actually thanked me and said to me, "If you had not been here, he would have died."
MR GRIFFIN: Did that gentleman have a support worker with him in the hospital?
JODY BARNEY: Yes, he did. He had a support worker, who had been working with him for the past three years and was unable to use any sign language. He didn't know how to communicate with the gentleman. He might just use gestures, or say, "Come on we will go for food" and just use very basic gestures. There was no in depth kind of conversation or explanation about his health conditions or explanation about why he was unable to return to country and couldn't engage in his cultural practices. Even though he was an NDIS support worker, he had no idea how to communicate with this Deaf gentleman.
MR GRIFFIN: Can I ask you rhetorically, Ms Barney, how could that gentleman give informed consent to any treatment being provided in those circumstances?
JODY BARNEY: That's the beauty of cultural knowledge. Cultural knowledge that I had meant that I was able to assess him as a Deaf person and his skills and his capacity to understand his ability to give consent, and when he was given access in his language he was able to do just that. He was able to provide consent. He didn't have a cognitive disability; he was just Deaf. That's it.
CHAIR: I think Mr Griffin's sorry, I think Mr Griffin's question was really directed to the point before you came into it and were able to communicate with the gentleman. I think Mr Griffin was asking how could this person have consented freely to any treatment if there was nobody who could communicate fully with him. I think that was the point.
MR GRIFFIN: It was, Chair. Yes.
JODY BARNEY: Yes, right. Okay. That's right. There was no other legal person with him to be able to secure that consent. The man had signed a document and didn't know what it was for and when I said to him, "Do you know what it was for?" He just said, "No, I just signed it because they told me I needed to. You know, it's the same as being able to get money. I need to sign thing things when I go into the bank and get money." So he just thought, "Well, I will sign that." After he understood, then it was a different situation and we could proceed.
MR GRIFFIN: Ms Barney, you outlined at some detail in your statement the importance of country to the people you're talking about. Is there an added stress on a Deaf or hard of hearing person when they are taken off country compared to an equivalent First Nations person that doesn't have that disability?
JODY BARNEY: Anyone who is removed from country will be upset. It is very distressing. It doesn't matter if you are Deaf or not. But for Deaf or hard of hearing people who are removed from country, they miss out on ceremonies. They miss out on information. They can't participate. They can't interact. They can't learn about lore. They can't participate. They won't hear what's going on. If they go to a community event, then they might feel very isolated and not be aware of what's going on.
If they can't find other family to assist them they will become completely withdrawn, and we see a lot of people who are living in city regions or in different communities or different towns that aren't on country who are lost. And often when I see people in SIL accommodation, they might go out looking for family. Trying to find family members or they may be angry or not angry but frustrated with their living situation. And they just want to talk with someone.
They want to talk with people who know them. They want to talk about what's going on, on country. And they will ask me, often, if I'm working with Deaf or hard of hearing people who are incarcerated or in hospital for a lengthy period of time. They will ask me to go to their home and meet with their family, and often I will do that and I will talk to members of the community, perhaps with other clients, and they will say to me, "If you are going to the prison, please tell my boy this. If you are going to the hospital, please tell me family this." So that they have access to what's going on on country when they are not there themselves.
There are huge barriers to being able to access culturally appropriate information and when you are not able to return home to country.
MR GRIFFIN: In your statement at paragraphs 29 to 30, you refer to a reluctance to engage with NDIS from some of the people you deal with. What are the barriers to those people engaging with the NDIS?
JODY BARNEY: Well, to be honest, a really a lot of clients with whom I work don't want to be involved in the NDIS because it's just another system that's messed up for them and doesn't work for them. It's just another system that controls what they do, that tells them where to go, who they can have contact with, what they must do, who can provide services to them. I know a Deaf person who has never had a hearing aid, has never used English, has never had speech therapy and now their plan is including conditions that is forcing them to go to speech therapy.
They are being told, "You have to go to speech therapy. And then you go and have some KFC afterwards, if you just go to this appointment." I mean, what on earth is that? That's not helpful. That's not helping people. Often when I arrive in a community, people will ask me, "What did you bring me? Did you bring me a new backpack? What are you going give me? Have I got some new shoes or a new water bottle or a cap or whatever." And I'm constantly stunned. Because when other people from off country will fly in, they bring gifts to give to people who live in those communities.
And I will just say, "Well, what you've got is me. I've brought me." Those other people, those other experts and professionals who fly in and out constantly might do so once a year or once every two years. But I've been flying into communities for years and years and years. I know people from childhood. I've known them throughout their childhood as they've been growing up. And that's what communities want. They want relationships with people who work with them. And they know that that will improve their lives. They want to work with people who will improve their lives.
COMMISSIONER McEWIN: Counsel, I do have a question. So, Jody, do you think that possibly one of the barriers in the situations that you describe is around the forcing of speech therapy and other services where they're not actually talking to the individual about what they need or want at that particular time? That there's no actual discussion, consultation or effort to try to understand the individual's needs?
JODY BARNEY: It's not all bad. I will say that first up. I want to make that very clear. It's not all bad. There are some wonderful people who work within the NDIS team. Wonderful people who are committed to ensure that they use an approach that's accessible and they have respect. We are talking about people who have complex language needs here. People who have other issues with the justice system or with housing, or with mental health or unemployment where it becomes more controlling from the NDIS in trying to think about what's best for them or people who have responsibilities to care for that individual think they know what's best.
And I've been involved in this too where I will say, "Hang on a moment, this is what I think is best" but I'm always conscious about my cultural responsibilities as an individual. Where is the client currently? How are they functioning? I will go and bring clients to places and have discussions and consultations with them, and they will come with me willingly. And so what I ask them to do is explain their plan to me and then I will approach the organisation that's supposed to be providing that service and act as a bridge, if you like, for them to communicate with each other.
Many clients, I've found, have plans and I thought maybe people assume that it is the best thing. They have got the best intentions in drawing up the plan, but they really don't have any cultural awareness of how to approach things in a better way. And if they don't have involvement from the client or from the client's family, then it's just not going to be successful. It's impossible to make a good plan and to make things better.
COMMISSIONER MASON: Thank you.
MR GRIFFIN: Jody, is there a unit or identified individuals employed by the NDIA that you can approach because they have specialist knowledge in relation to the needs of Deaf or hard of hearing First Nations people?
JODY BARNEY: I do know that the NDIA the NDIS have people who do work in various divisions at different levels, and they have a range of different experts that are in their employ. But there's not one that I'm aware of who has the same kind of level of understanding as me or the same philosophy as me. That doesn't understand Aboriginal and Torres Strait Islander people who are Deaf or hard of hearing. It's not impossible to find the right people and to employ them; however, often the system, I find, has become just so oppressive and it's been weighed down by paperwork and bureaucracy and legislation and so forth.
And I understand it's important and it's a lot of money that's being invested in this system. However, we're talking about people's lives here. We're talking about an individual's needs, their access on country. And I think to myself, if you don't have expertise in the room, it's like having an electrician go and fix a plumbing problem. You know. It's not going to work.
MR GRIFFIN: On the issue of cultural competence within NDIS service providers, is your experience that there's a high level of cultural competence in relation to the clients you deal with?
JODY BARNEY: There are many organisations and service providers with whom I work that struggle with that. They really do struggle with that. They aren't funded. They don't have additional money to be able to improve those skills, or client's plans don't have sufficient funding in them. Or it's just impossible for them to try to achieve the same kind of outcomes. So part of the issue, I find, is when it comes to cultural competence, for First Nations organisations, of course they have cultural knowledge.
But if you're talking about Deaf organisations, organisations that provide services to hard of hearing people or people with a disability, they understand about the culture of disability, but we don't find one place where the two things exist. And when you're talking with other organisations who are like me, who are trying to actually make those two systems talk to each other, and try to find a good fit, often it's quite competitive. A lot of our mob simply won't bother, and they will work pro bono. They will just roll up their sleeves and get stuck in and do what needs to be done.
I've been doing this work for over 35 years, and I've done it before the NDIS was established, and it doesn't matter if the NDIS is successful or not. I will continue to fulfil my obligations and keep doing the work that I do. Cultural competence, I think, needs to it be a priority. It needs to be a top priority. People need to listen to individuals who have lived experience, and they need to have experienced experts. People with life experience who are working as the experts in the area.
MR GRIFFIN: Has the NDIA ever approached you to act as a consultant to them in relation to the issues you're raising?
JODY BARNEY: No.
MR GRIFFIN: Would you like them to?
JODY BARNEY: Oh, I've got plenty to say, so, yes. I've got plenty to say, so of course I would, yes. Yes, I would like that. I think that I'm a glass-half-full kind of girl. Hopefully, when we're looking at outcomes for people and what happens with the DRC and your findings, I think that what I would like to see is we've got a bigger pool of expertise. People who know about our mob, people who have the right kind of skills to fit our needs and to allow our people to live on country with appropriate access to services and support.
And if we are looking at economic development on country, those sorts of things would make sure that you would have increased employment, people who know our mob best, who know our language best, who understand our needs for ceremony and so forth and our cultural needs. It's best provided on country. The skills those experts are already there on country. Why do we need to remove people constantly and put them in different places? That doesn't make economic sense to me.
If you build a you just need to build bigger prisons and bigger hospitals and bigger education systems to cope with this problem. If you just fund people in community on country, you can set up the services there because we have got a wealth of knowledge there. And we can continue our lives in our culture for millenia to come.
MR GRIFFIN: In the meantime, are you mentoring our teaching people to develop some of the skills you have?
JODY BARNEY: Yes, I am. Yes. I have to say that nothing gives me more joy to see young people that I've known from birth become young adults now and to become advocates and to be really assertive and to represent their community. They live on country, they have a strong cultural identity, and they want to help others in community. And, currently I don't have many. There are very few around the country, but my role at the moment is to kind of take a back seat, if you like, and encourage these young people who have the skills and the knowledge and, of course, if they need help, I will provide that, but if not, I'm really happy to see them go out and do the work and, as I said before, do myself out of a job. So I can retire and look after my own kids.
MR GRIFFIN: Chair, I note the time. I was wondering whether I might make available some time to the Commissioners for questions.
CHAIR: Yes. Thank you very much. Commissioner McEwin, do you have any additional questions?
COMMISSIONER McEWIN: Just one more question, if I may. Thank you, Chair. And it's one, I promise. I think anyway. When you meet a new client or just happen to run into a Deaf First Nations person, how do you what do you do in terms of working with them? Maybe you have different your languages aren't the same. So how do you build rapport and work in an appropriate way to work in a way that can fulfil their needs? What do you do?
JODY BARNEY: Often when I meet a person for the very first time, I will indicate, you know, "We're both the same. We are both Deaf." And I will often get an interesting response and say, "You know, you and I are both Aboriginal" and I will develop different signs and I might use their specific sign for "father" as opposed to the Auslan sign for father. So we will have a conversation and I might say, "I'm here to help you", and we will talk about a range of things.
It depends a lot on the person, and it depends upon the sign language because there are a lot of really different sign languages, of course. But when I'm working with people, it's first of all just an introduction, and if they have a different preference, that's okay with me. Of course, I always seek permission from family to work with an individual. I never go in cold and approach a person without an introduction.
Often a person might approach me and ask me for advice, and I am very clear about seeking permission from an elder or from the appropriate person. If I'm working with a male, for example, I make sure because I understand that a male's language might be quite different to my own, I always seek permission. And if I'm not appropriate, I will always find a person who is appropriate culturally. I'm not offended if an individual says no to me offering assistance. It doesn't offend me in the least.
COMMISSIONER McEWIN: Thank you. Thank you, Chair.
CHAIR: Any further questions, Commissioner Mason?
COMMISSIONER MASON: I'm interested in the area of cultural competency, cultural safety, some core cultural acumen, and the intersectionality of cultural information, training and disability. Are you aware of any higher education institution that is providing information around that topic? In terms of a course or certificate?
JODY BARNEY: You mean in general or for First Nations Deaf people, I'm sorry? I just wanted to clarify.
COMMISSIONER MASON: I'm particularly interested in First Nations, that intersectionality of disability could be for people who are Deaf or hard to hear, providing more understanding of that intersectionality. Are you aware of any institution providing those courses or certificates?
JODY BARNEY: I see. Okay. A short while ago, I was contacted by Dr Scott Avery, who let me know that he had been using my work in his course at the university for the University of Sydney, I think. In fact, I think it might have been the University of Western Sydney. I think I've got that right. Okay. So that was lovely to know. I know that he does teach a course. I think it started this year, and it's brilliant. It's a really fantastic course.
I think in 2017 I worked with Professor Kerry Arabena at Melbourne University when she was establishing the First 1,000 Days program. I was involved in that. For the First 1,000 Days of parents with a disability looking after their own children their own babies. So that's grown since that time. There's a lot of research currently being conducted and a lot of funding being distributed about the NDIS Utilisation Project and research being conducted from Melbourne University, the Disability Institute there, and Griffith University in Queensland.
I've been fortunate enough to work with both of those institutions, talking about that particular topic of Deaf for Deaf and hard of hearing First Nations people who use the NDIS and what the comparison is around the country of what the percentages are of people who access the scheme.
COMMISSIONER MASON: We want non Indigenous, non First Nations people to be working side by side in our institutions, our First Nations organisations and institutions that are there to support and assist First Nations people with disability. We want people to come with understanding and knowledge and a greater capability because they have done learning or training prior to coming into institutions. And, of course, it would be a life long learning. It's not just doing one course.
I did a degree in Aboriginal Affairs, Public Administration, in 1988 well before 1999, Chair, when the conference was held here in Alice Springs. And there was no information about disability in that degree course. So, you know, all of us are learning. What's your understanding or what's your perspective about we seem to have a proliferation of organisations having consultants developing cultural safety or cultural competency courses for corporations or institutions, and then we have this more formal system through the education system where you can get accreditation.
So what's your as someone who works on the ground with people receiving services, what's your perspective on the tools and the skills that non Indigenous people particularly need to work with our First Nations people with disability? Particularly those who are Deaf and hard to hear at that you know, that direct face to face service delivery?
JODY BARNEY: A lot of training. For example, I work with Auslan interpreters who are booked for a variety of clients, for whatever reason. And often, training for Auslan interpreters varies a bit around the country. It's not core business for interpreters, for interpreting services, to think First Nations Deaf and hard of hearing people. So because the system only recognises Auslan as the language for Deaf people in Australia and they provide access to Auslan interpreters, the view is that the work the work is done, the job is done.
But we are seeing a growing group of Deaf interpreters who don't only contact me, but other Deaf and hard of hearing Aboriginal people and Torres Strait Islanders as well saying, "Look, I don't know how to communicate with people." So we need to improve training for them as well and give them access to really high level training high quality training and to work within the NDIS system and know how to do that as well. I think the NDIS itself must have interpreters, an interpreting unit. A complete division for interpreters that works with all languages.
And booking organisations who are trying now to secure interpreters and finding it difficult because we don't have sufficient Auslan interpreters in the country; it's as simple as that. We simply don't. I'm not talking about Aboriginal interpreters. I'm talking about general Auslan interpreters for Deaf and hard of hearing people. There are simply not enough of them.
When you were talking about training and development, encouraging people to engage in that, it has to be affordable. It has to be designed and created with the right people to ensure that the cultural competence is actually being achieved. That's the first step. You can't have units of knowledge and expertise and so forth if you don't have people with experience in the room. You can't create those sorts of things without the right people in the room.
And I know from myself, from my university studies, that if I don't have access to those kinds of experts, I don't learn anything. It's the same if you have people who have knowledge who are brought in to teach. They must provide accessible information to the people they're teaching. And cultural competence must start in the home. We know our mob, our people, suffer oppression in a whole range of arenas. Racism, discrimination, and so forth.
And I'm sure that people watching me today will think, "Oh, she doesn't look Aboriginal." I assume that. It's a natural response that I get all the time, that people don't believe that I am an Aboriginal woman. So, I have to work maybe two, three, four times harder, and often I have to work not only from a cultural safety perspective, but from an academic space as well to make sure that I have a voice at the table. That I'm heard. And if I can't get it, it's impossible for people on country to get it. If I can't, how could they?
If I have everything that's been afforded to me, if I have funding, I'm able to access information, I have a whole range of opportunities that have been provided to me and I can access many of those things myself, but if I can't get a seat at the table and if I can't get respect for people who need access to this kind of communication, then what hope do people on country have? What hope do people in the NDIS have if they have been removed from their language environment and from their country and they are put into a different environment with a different language and often people who work with those clients are doing a wonderful job, but there are other people from overseas who don't maybe even use English as their first language who are involved in providing services.
So, you know, we need to unpack the priorities for training, for support workers, training for people who are working in the adult allied health areas. People who really do understand that it's vital for individuals who need access to get it in their first language first as a priority. It doesn't matter if you are Deaf or hard of hearing, or it doesn't matter where you come from. You need to have access to information to make informed decisions about your life.
How do you create self determination for individuals if they're refused their primary right to get access to information in their preferred language? How do you get that?
COMMISSIONER MASON: Thank you.
CHAIR: Ms Barney, taking everything you have said as a starting point and forgive me for putting on my lawyer/practicality hat how many First Nations people are there who communicate through First Nations sign languages of one kind or another as their primary means of communication? Do you have any information or do you know of any information about that?
JODY BARNEY: I only have my own data. My matrix information that I've gathered over 35 years of working in the field from many family groups with whom I've worked over 200 communities around the country that I've worked in. And also there are new people I've never met before, and I'm constantly amazed and I think to myself, well, if I had been there, I could have improved their situation and provided some assistance. But for First Nations Deaf people that I have included in my data, there are about 1,500 who have very complex communication needs.
From that many, often I find that they're in detention, they have poor health, they have been removed from country, they have been isolated from their families or excluded from their families, and we know from hearing health an ear health perspective, the prevalence of otitis media or middle ear infections is extremely high. And I'm sure
CHAIR: I'm trying to I'm trying to get a sense of this in order to see what would need to be done to do achieve the sort of training programs that you've been talking about. So, if we assumed that there were let's say 3,000 First Nations people whose primary means of communication that is, people who are Deaf their primary means of communication are through a First Nations sign language as distinct from Auslan, I'm trying to get a sense of what we would have to do to achieve the training to enable an organisation like the NDIA to communicate effectively with those people.
And I see from your statement that you're aware of 55 First Nations sign languages across the country, and as I understand what you said earlier, many of those are not mutually comprehensible to each other or those who communicate are not mutually comprehensible. So, what I'm trying to work out in my own mind is what would be needed to achieve the kind of linguistic capability that you have so strongly argued for and the benefits of which I think we could readily see. How would we do this?
JODY BARNEY: My apologies for not answering the question definitively the first time. That's for you.
CHAIR: That was that was undoubtedly because the question was not clear.
JODY BARNEY: I sit on the NAATI Indigenous language project. I'm involved in that project. I'm an advisor, and what we are doing is that we're looking at how we might be able to grow the pool of interpreters throughout Australia. So, through First Nations lens, when we think of cultural competency, there are many wonderful spoken language interpreters out there where they automatically will use gesture or use their sign language system to fit in with a spoken language in order to be able to establish communication, to try to ensure that communication is flowing smoothly, but they are not funded sufficiently to be able to improve their skills.
Aboriginal interpreting services around the country often will say they are the last people who get any kind of meat. They get the leftover scraps in terms of funding. So if you are thinking about future development of First Nations people who need access to interpreters, that's where I would start. I would start where sign language interpreters who have Auslan skills can work with Aboriginal spoken language interpreters in order to create their own kind of model, of course, and context where myself and perhaps other people from around the country would be able to advise them on how to work in the best kind of way where we are not being assessed; we are the ones that are assessing them.
We're the ones that are monitoring them. We can build capacity and competence where we can find Deaf people in community, where they can train to be interpreters, and Auslan interpreters who might not know that context could be paired up with them. That's what I currently do. If we can have the funding made available in those spoken language interpreter courses and Auslan interpreter courses in order to create another course to develop skills where people who are in community can become qualified interpreters, perhaps both in a spoken language and a sign language, that would be brilliant.
CHAIR: Thank you very much. That's a very helpful answer, if I may say so. Thank you.
COMMISSIONER MASON: Chair, can I just ask a question following on from that very interesting question. The Aboriginal interpreter service here in the Territory, do they have First Nations Australian sign interpreters?
JODY BARNEY: No, they don't. They only provide spoken language interpreters.
COMMISSIONER MASON: And has there been any discussion around a provision of First Nations sign interpreters?
JODY BARNEY: I have been coming here to the Territory for over 20 years and often the we start a conversation about this need, and we get some way down the track, but often it's shut down because there is simply no funding. It doesn't go any further. So the onus is on the spoken language interpreter the onus is on the spoken language interpreter to use sign language to try to fit the to fit with the spoken and sign language interpreters to kind of provide communication access.
There's a lot of pressure on them and a lot of responsibility on them. The Auslan interpreters, they're here, we've had a few over the years, but for many years I think for maybe 11 years or so there's been only one professional level certified interpreter. For 11 years, that's been the case. Currently, we are seeing a larger pool, a bit more investment in trying to help people to learn Auslan and then become certified interpreters. But it doesn't cover First Nations people who are Deaf. That's Auslan focused only. It doesn't include Aboriginal sign languages.
That needs to be changed, I think. We need more people not only First Nations individuals, but people who might have come from overseas to come to live in the Northern Territory, for example, they might then marry someone from the Aboriginal community. You know, I think there's a whole range of people, different backgrounds we could look at. I think if we could cover all of those needs, we could cover the larger linguistic need that we have here in the Arrernte lands with the spoken language and Yolŋu language that is used in the territory. If we could cover that in the trial, then I think that would be fantastic. That would be a really great start, if we could look at that, just looking at those languages.
COMMISSIONER MASON: Thank you.
CHAIR: Thank you very much. Thank you very much for the really interesting and helpful evidence you have given today, not just the statement but your oral evidence.
JODY BARNEY: Thank you.
CHAIR: It's probably a good idea if you would consider postponing your retirement for a decade or two until the necessary systems can be put in place. But, in any event, thank you for your contribution to the
JODY BARNEY: Thank you.
MR GRIFFIN: Can I raise one technical question.
MR GRIFFIN: One technical question I omitted to ask earlier on.
CHAIR: Yes, all right. Well, Mr Griffin wants to ask you a technical question.
MR GRIFFIN: Ms Barney, is there an agreed national or international definition of "hard of hearing" as opposed to Deaf?
JODY BARNEY: Right. Well the World Federation of the Deaf recognises the terms "Deaf" with a capital D, which means people who are sign language users. They prefer to communicate using sign languages and they culturally identify as Deaf. And they are linguistic minority. Hard of hearing is a term that's used by people who have a hearing loss of some sort, who may use spoken language or may use sign language or may use both and change between them, depending on context.
MR GRIFFIN: Thank you. Thank you, Chair.
CHAIR: Thank you very much. Is there anything else we need to do this afternoon?
MR GRIFFIN: No, there isn't, Chair.
CHAIR: So we should adjournment until 10 am Central Time tomorrow.
MR GRIFFIN: Tomorrow for Emily Sherwood.
MR GRIFFIN: Emily Sherwood will be the first witness tomorrow.
CHAIR: Thank you again, Ms Barney, for your evidence. We will now adjourn until 10 am tomorrow.
JODY BARNEY: Thank you, Commissioners.
<THE WITNESS WITHDREW
<ADJOURNED 4:33 pm TO TUESDAY, 12 JULY 2022 AT 10.00 AM